The Book
"Vaccines Autoimmunity and the Changing Nature of Childhood Illness"
By Thomas Cowan MD.
May help in much of this.
4
I probably had Sjogrens for a decade before being diagnosed.I had begun eating tons of fruit as a way to quench my unceasing thirst, and didn't even notice for quite some time. When I had cervical spine surgery in my mid 40s,(over a decade ago) one of the 3 that had to be removed was like dust. It was baffling to me (and to the neurosurgeon.) I was living with Lupus and being treated for probably 20 years and never thought about my tearing eyes every night. I figured it was some sort of allergy related thing. And my 2 awful sunus surgeries and chronic rhinitis, were never considered as part of Sjogren's. And other dryness etc was attributed to menopause (and lupus). I began taking Xiidra for severely dry eyes, and have been using artificial tears throughout the day and ointment at night for years now. I get tear duct plugs every three months, which is beyond crazy expensive. Each doctor dealt with that body part separately. Finally a rheumatologist suggested Sjogrens (secondary to Lupus). I use Act and Biotene everything all day. I now have terrible Rosacea and eczema that are incredibly difficult to manage,and severely limit what I can do and consume. It's interesting that so many manifestations have developed despite being on Plaquenil for over 25 years. I am constantly frustrated and uncomfortable, but overall so grateful that I can take care of myself and that it isn't worse. Still, I hope there are some new interventions on the horizon, as it so difficult to manage.
9
My doc mentioned stress as a trigger for the expression of Sjogrens. It seems likely to me that women in mid-life in this day and age experience an extraordinary amount of stress - parenting, work, marriage, family, and financial stresses come to mind. Then after we are diagnosed, we are subject to the stress of dealing with complicated health insurance policies. I have a Cadillac insurance policy with my employer, yet I still struggle to get medications filled, tests covered.
9
I've been struggling for the past few years to find a doctor to diagnose me. I have extremely dry eyes, extremely dry mouth and joint aches. In the past six months I've been hospitalized with blocked saliva glands and had two operations (if you can avoid a parotidectomy, please do, believe me) but still nothing is found. I've had the lip biopsy. Now I think I'll look into the B Cell lymphoma since I've already had Hodgkins, maybe there's something down that road.
5
This is what Venus Williams has. Surprised her experience wasn’t mentioned
11
One thing I want to add is that women with Sjogren's who get pregnant and carry the fetus may result in the baby getting heart block. The antibodies flow thru to the fetus. Women with Sjogren's who want to give birth to a baby should have a consultation and thorough check up with a high risk pregnancy doctor. There are different types of Sjogren's antibodies, some affect the fetus more than others.
8
I suffered horribly from dry eyes, painful enough to wake me at night, until an opthomologist asked if I was willing to try serum eye drops. Now I get six tubes of blood drawn that are sent to a specialty lab that makes drops out of the serum. I usually get five months of drops. They are stored in the freezer and every week I move a new vial to the refrigerator.
Within one week of using the drops, I was able to produce tears after 18 months tear-free. It's covered by my health insurance.
24
I have dry-mouth secondary to sclerosis. Recently I had most upper molars removed despite a lifetime of regular and careful dental care. Is it related to the immune system disorder or to the bone density drug or??
5
@Mary Ann I'm not sure I understood your question correctly, but our saliva helps protect our teeth. The dry mouth itself can be a cause of tooth decay. My mouth is dry from medications, and I was on the hook for 10 fillings after starting them. I started chewing dental gum after meals and happily most of my cavities had resolved by the follow up appointment. Frustrating that such a simple fix existed.
4
My sister spent a few years waiting for the correct diagnosis because she did not have the traditional symptoms.
2
Doc Martin diagnosed Aunt Ruth with this. She thought she had lupis.
8
I would love to know the name of the device she bought on eBay for $10.
6
@AV I don't know if this is the same one, but I was just diagnosed and a kind friend just brought me a "Bruder Moist Heat Eye Compress" that you microwave and apply for moist heat. I haven't tried it yet but might be worth googling. Will try it tonight
8
My doctor recommended the Bruder eye packs and they are amazing. Find a YouTube video on how to massage your tear glands after using the bruder 2x per day. Works way better than the constant eye drops I had been using!
4
Something is wrong in our food and our environments. Too many people are developing these autoimmune disorders. Can we please find out why?
Treating symptoms makes money for big pharma. Eliminating the causes would destroy a big cash cow for these companies. When are we going to choose the health of human beings over the health of some bank accounts?
23
Parasitic worms. Or, rather, the lack thereof. We evolved together—2 billion humans are still infested in poorer countries. Various intestinal worms evolved proteins to tamp down our immune systems so that they wouldn’t die; we evolved ways to ramp up our immune systems to counteract this effect. Now that we suddenly don’t all have parasitic worms, our immune systems remain ramped up for nothing. That’s the hypothesis put forward in the bestseller book: “Immune: A Journey Into the Mysterious System That Keeps You Alive”. Also, tBHQ and BHA (preservatives/anti-oxidants), as well as PFAS, are also suspect.
7
@Sally smith There was an interesting study about this between the border of Finland and Russia. The Russian side was more rural; people kept animals, gardens, spent more time outside. The Finnish side was much more urban and people lived in apartments etc. Despite having significant overlap in population and genetics and movement between the two sides, the Finnish side had a substantially higher occurrence of autoimmune diseases. I keep a cat and a garden and try to only clean with hot water and a cloth except where necessary; I also take probiotics and try to eat fermented food or be a little more relaxed about use by dates, etc. Obviously there is a fine line between exposing yourself to a little dirt and getting food poisoning or listeria. You can be careful but reasonable about it.
8
I was diagnosed about 3 years ago at age 71 when the optometrist couldn't get a correct reading for my glasses after three tries. Plaquenil has helped enormously as has Restasis, although I've recently had eyedrops made from my own blood serum at a compounding pharmacy, which is just as good and not as expensive.
I always wondered why I had so many dental problems through the years even though I took ordinary care with my teeth. When I asked a dentist one time about why I needed periodontal work around my crowns, he just said "well, some people's mouths just don't like crowns." Dentists and optometrists need to be educated on Sjogren's.
22
It's also a costly disease. If you don't have health insurance or you do but have a high deductible you're on the hook for a lot of money. People don't ask to have illnesses that are costly to treat or that can cost them their jobs. It seems to this reader that all too often the problems people have with our "health care" system are more upsetting than the problems bringing them in contact with the system.
I can recall when I was in therapy and taking medication. Every time I saw the psychiatrist for the medication check up the insurance company denied my claim for therapy. Then, when I explained it to them they would turn around and deny my claim for the psychiatric care. I finally stopped submitting the claims to them and paid out of pocket. I was lucky and could do that. Not everyone can.
What I see with our "health care" system is how badly fragmentation hurts our care and our willingness to get care. Perhaps if we had a "united" system this wouldn't be such a problem. Then again, given that we have a for profit system where the bottom line matters more than our health, it may never change.
24
Dry eyes and mouth have been a major problem for me for over 2.0 years, along with a Lupus diagnosis. Upon a friend’s suggestion I eliminated gluten from my diet and within a month the dry eye problem vanished. After many years of maintaining this diet I began introducing gluten in very small amounts. Now I indulge in pasta once in a while as well as regular bread, but I’m very careful and not overdo it. Dry mouth still persists but this can be managed with OTC aids. Burning tongue is another problem and I haven’t found relief for this issue.
8
I have been diagnosed with Sjogrens, Fibromyalgia, Chronic Fatigue, Sciatica, Acute Anxiety, Acute Depression, IBS, TMJ, Breast Cancer, BRCA, Lymphedema, PTSD, Incontinence and most recently diagnosis of Chronic Strokes, Small Fiber Neuropathies, Autonomic Nervous System Impairment and a Heart Blockage.My hands drop everything (trigger thumb I just read on the Smart Patients forum is a Sjogrens symptom,)however, a few years ago when I asked my Pain Doctor for a referral to a Hand Specialist he sent me to get my neck fused), unbearable taste of salt, breaking teeth, eyes without depth perception and acute corneal abrasions and Raynaud’s (all Sjogrens issues). The latest diagnoses of Chronic Strokes, SFN and ANS explains shortness of breath, sensitivity to pressure changes, not being able to regulate my temperature, blood pressure, sweating, coordination and movement, speech changes, swallowing which causes choking, more vision issues and controlling eye movements, confusion following conversations, paying attention, remembering words, spelling, names of objects, recognizing faces, losing thoughts in the middle of speaking, extreme poor balance, neuropathy, aphasia, sensitivity to light and sound, poor concentration, thyroid disorder, (a side effect from the Radiation for breast cancer) and Brain Fog. I have left the stove on, more than one occasion, and left.
I have been on this autoimmune journey over 50 years & post on Facebook as Mary’s Autoimmune Page.
22
I was diagnosed with AIH (Autoimmune Hepatitis) in 2018. Because I’m in my early 70’s, every article on autoimmune conditions piques my interest as I’ve been told they are all related and one can trigger another. I’m on just one medication twice a day; I try not to think about what my random aches and pains may signify, or not. Sending you wishes for strength on your journey.
10
You have a lot on your plate. I have peripheral neuropathy and it is dreadful. I am sorry you have so very much to contend with. I know it is a full-time job and I wish you the best.
10
The information was good but minimize the seriousness of complications from Sjogren’s. It can cause numerous complications that limit ones quality of life. Fatigue doesn’t even begin to describe the overwhelming exhaustion I live with every day. Sjogren’s organ involvement is a significant complication of the disease. I have interstitial lung disease, gastrointestinal issues and cognitive problems from Sjogren’s. All of these complications happen from Sjogren’s. Living with Sjogren’s is not easy. It is like you have some degree of the the flu at varying degrees everyday of your life.
58
@Debbie Wight I completely agree! 💯
2
@Debbie Wight
I agree as well. I was diagnosed 5 years ago and I feel the disease is progressing. I now have joint issues and pretty severe gastrointestinal problems, as well as the dryness. I’m grateful I have not experienced the overwhelming fatigue many suffer from. I work out with a trainer 4x/week and I think that has helped. Also, I wish doctors would take this condition more seriously. My last rheumatologist actually said, “ if you have to have something, Sjogren’s isn’t a bad thing to have.”
1
maybe if restaris weren't spending so much on advertising the price could be lower.
37
@Keevin Xiidra works better for me than Restasis. Still expensive though. Best thing I did was to get plugs for my lower tear ducts. It sounds dreadful, but it is not and helps tremendously.
7
My daughter has been struggling with trying to get a diagnosis for almost 12 years. She has had problems with dry mouth, dry eyes, severe fatique,pain in muscles and joints and multiple other problems. I have had to cook for her, do housework, take her to her drs appointment and multiple other chores because of her severe fatique. If you look at her she does not always look "sick"but I have diabetes and you wouldn't know it by looking at me. People think that sojgrens patients just need to try harder, eat better, exercise more and they will get better, but how do you do those things when you are struggling just to get out of bed and see if you can stand or walk today. This is an awful disease and it takes away a persons life, I have been a nurse for over 30 years and have seen some very sick and ill patients, but my heart breaks for my daughter who has a masters in social work and has always wanted to help others and for the last 12 years has had to struggle to find help for herself and on somedays doesn't have the strength to try, can only move from bed to sofa. There needs to be more research going on the help the untold number of patients suffering from this illness. We spend so much of the tax payers money for foreign aid and we don't do anything to help our own ill American people who are despirate for some relief from this awful illness.
55
@joann reeves Most Sjogren's patients don't look sick. I believe we try our best to appear "normal." SS is a miserable disease. Family and friends may try to understand but really cannot.
6
@Mary R. unless you experience it than you can't possibly know! That's why support groups are so important!
1
Hypothesis #1: your body is attacking itself. Treatment, immunosuppressants. Hypothesis #2: your body is "falling apart" faster than it can repair itself. Treatment, for women, Testosterone supplementation. Don't scoff. Google, "Practical Pain Management", Testosterone and Pain. It is worth pursuing. If it works, you'll know in two weeks. If it doesn't work, no harm, no foul. Oh, it will never be subject to FDA trials, because Testosterone is a generic, and nobody spends millions on a double-blind test of a generic.
11
@dh Also supplementing with DHEA and Pregnenolone in addition to testosterone has helped me tremendously!
6
Please do a second article that emphasizes the seriousness of the "dry" eyes and "dry" mouth. Also that explains in more depth the "fatigue" and how it is debilitating. we have no voice. there are few of us that can get out of our house except for a doctor's appointment. I've lost my job, my marriage, all my friendships, social life, my opportunity to have children, my hopes and dreams of things i wanted to do in this life. From the comments you have seen here please let the public know the reality of this illness and that we exist.
54
Treat this autoimmune the same way you attack the rest of them. Triggers include gluten, dairy, etc. Concentrate on a plant based diet and load up on anti-inflammatory foods.
Look carefully at your diet. Watch the nightshades like tomatoes and limit grains.
Researchers are exploring short/four day broth fasts to rest your body and fight inflammation.
8
@Mary Rivkatot, I, like most of us, do all that but I still have profound debilitating fatigue, dry eyes and I have lost my teeth. It takes me days to recover from a doctor's appointment or an hour of grocery shopping.
30
@Mary Rivkatot my cousin is vegan and has been for about 15 years... she is one of the smartest, most well informed people i know. she still suffers enormously from fatigue and other ailments and she usually does it silently. i wish there were more attention paid to this. she went from being an outgoing, athletic, interested person to one who suffers from this and the unexpectedness of exhaustion and depression. not everything can be cured or improved by a plant based diet.
37
I've been mostly vegan all of my life. It didn't keep me from getting sick either, but my function level is higher than friends who are not plant-based. Now that I'm avoiding sodas, fried foods, and most of the commercial products, I am feeling better. I worked as a dental hygienists until I was 70 and still substitute when I feel like it. I'm part of that Loma Linda Blue Zone study as were my parents. We do live longer with a vegetarian diet. My rheumy, a world famous researcher, feels like I do so well because of my diet.
16
As a dry eye sufferer I completely sympathize with those commenters here. I do not have Sjogrens but, like many post-menopausal women, have meibomian gland disease and insufficient tear production. For those suffering from non-Sjogrens dry eye, 90% of the problem is meibomian gland related. Lipiflow was not the answer for me. Only meibomian gland probing truly opens the glands and keeps them open. There is an excellent doctor (Maskin) in Tampa who really understands the complexity of dry eye. He has been a literal life saver for many.
9
@Amy Haible yes to both. I had mumps around 9 years old and find an afternoon lie down (or whenever I feel really exhausted) a very effective fatigue and stress buster. It is also good for those of us with autonomic dysfunction (POTTS or postural hypotension)
7
@Sandra fatigue with sjogrens syndrome is not the same as feeling exhausted or tired. it is like someone gave you a sleeping pill and you pass out. i have had my family come in while i was on the sofa. they have vacuumed right in front of me and ran the dishwasher. my dog got excited and i did not wake. I recently had surgery and my mom ( a wound care nurse changed my bandages without waking me and i was on NO medication. I hate when people say "fatigue" or "tired". no offense or belittling your symptoms but I have struggled with this for 12 years with no help or belief except for my family, primary care doctor, eye doctor and dentist. that is because I make no saliva unless stimulated and i make no tears so i have $ 8,000 contact lens to hold saline inside the lens. I also have Potts.
20
I'm hoping someone might be able to offer some insight into
two questions I've always had about Primary Sjogrens.
1. Has anyone ever had mumps as a child?
2. Does taking a mid-day nap alleviate/eliminate your fatigue?
(i.e. do you feel refreshed after a nap?)
Thank you for any info you can provide!
6
@Caroline I did not have mumps as a child. When I was exposed to it at work I went to my doctor who told me I had immunity to mumps. This was over fifty years ago so I'm not sure what he based this on.
If I crash from doing too much sleep does not alleviate fatigue. It takes about two days.
I don't do mid day naps because I have a sleep disorder.
6
@Klara Thank you Klara! Since this article stated that an infection may be a precursor to Sjogrens, I thought my bout of mumps 55 years ago might have been the cause of mine.
I appreciate your response and hope you have many more good days than bad regarding Sjogrens!
2
@Caroline In my generation a huge proportion of people, probably a majority, had mumps in childhood, which would diminish the usefulness of any ties between mumps and just about anything else in people who are now elderly. There was no prevention that I am aware of, no vaccine and no real treatment. It was a disease that parents actually promoted, since, like chicken pox, it is mostly harmless in children but dangerous for adults. Better if you got it as a child, was the thought.
6
I had dry eye symptoms for years when I would fly for my job. The treatment that helped the most is CST Craniosacral Therapy. A non invasive technique that is given by physical therapists or massage therapists trained in the Upledger Institute model of alternative treatment not usually covered by insurance.
2
I've was diagnosed with dermatomyositis by my rheumatologist, and after 10 years on hydoroxychloriquine, I am now taking a compound med, quinacrine, and my dermato symptoms and blood work are stable. The dry mouth symptoms described here have bothered me for about the last year, and I will follow up to see if this symptom is related to my disease or indicative of Sjogren's as well. The quinicrine powder is no longer available from US pharmacies, but there is a NJ online compound pharmacy which imports it from Canada.
2
@Wrthr i replied above I am so angry with the medical system in USA. my rheumatologist actually put in my chart that my dryness was from exhaustion and anxiety. i found a company in Israel that makes a mouth piece that uses electrodes to stimulate your gums. He has seen how dry my mouth is and that i have trouble speaking, chewing, and cannot spit. The piece was $3,000 and I'm trying to get insurance to cover some of it. But with out a diagnosis from a rheumotologist it is not likely. My insurance paid for my $8,000 contact scleral lens because after going through 3 eye doctors and many tests they see that my eyes are so dry it is affecting my corneas and my oil glands are almost gone in my 40's
7
That's me: Sjogren's syndrome. But first, I was diagnosed with Chronic Fatigue 9 years ago, that resolved and then I was left with Dysautonomia, then that resolved and I was diagnosed with Sjogrene's syndrome and histamine intolerance. Both remain. I take Restasis and flaxseed oil. The best treatment for me is exercise, and flooding my body with vegetables and fruit. So much great information here.
11
I was diagnosed with Sjogrene's about 20 years ago. My main issue is severe dry eyes. I went to every doctor in a 10 mile radius to get answers and received many different treatments. Restasis for 5 years - didn't work, Blood serum eye drops helped for awhile, numerous eye drops from steroids, to allergy drops to antibiotics. Even a full-eye contact lens coated with embiotic fluid - talk about torture! I gave up on that doctor when I was told the only solution was to sew my eye shut until the inflammation cleared up. Thankfully, he sent me to USF Eye Clinic. I now use Dailies Total contact lenses everyday to protect my cornea, gel at night with an eye shield and 20mg twice a day of Doxycycline. I do have flare-ups a couple of times a year, I just increase the Doxycycline to 50mg twice a day for about 10 days.
Dry mouth is not as bad an issue as the dry eye and I use pilocarpine 3 times a day. I have noticed I sweat a lot more lately.
Something very useful for dry mouth is Spilanthes Extract. You can get it a health food stores in a dropper bottle. I also bought seeds and planted my own. Be aware that chewing a leaf or putting a few drops on your tongue will cause your saliva glands to go into overdrive. It is temporary.
I also experience fatigue, arthritis joint pain and losing feeling in two toes.
Blood test shows positive ANA levels, low sodium levels and low white blood cell counts, low absolute neutrophils, low absolute lymphocytes. Otherwise normal bloodwork.
12
This is likely, “a disease under the radar” because “The primary form affects... nine women for every one man”—still often the case when something primarily affects women or other minorities.
72
@ER Your excerpt reassembled the story text to fit a political agenda. Jane Brody does not say the obscurity of the disease is due to gender differences in incidence but rather on other factors, especially the similarity of symptoms with various other conditions, and the low incidence generally. This is a theme of many of Brody's stories. The story notes that diagnostic progress is being made as knowledge spreads.
1
@WBS It's not a political agenda, it's indisputable and data-driven. It's the same with heart disease, too. White men have been studied more than any other group, so your symptoms have to meet their symptoms. Please, keep the political agenda out of a medical conversation.
29
No that's not really the case and certainly wouldn't be trying to play the female victim card here. The fact is it's a very hard disease to diagnose. Many of the symptoms are similar to someone who has allergies and the tests for SS-A & SS-B antibodies are imperfect & expensive. (I was tested 4x and only once did the elusive little SS-A antibodies make an appearance.) It took about 3.5 years for me to get a diagnosis and even then my primary doctor just thought I was a hypochondriac.
8
The reason that Restasis continues to be so expensive is appalling. In 2017 Allergan transferred all patents for Restasis to the "Saint Regis Mohawk Tribe" in order to shield the drug from legal challenges to the patents given the tribe's sovereign immunity. The tribe then granted Allergan back an exclusive license for the drug. Et voila, competition is thwarted and Restasis prices stay super high!
Sickening.
54
@Shari C That legal fancy footwork on the part of Allergan is really despicable! My insurance no longer pays for Restasis. That was a happy accident for me because I now use Xiidra, and for me, Xiidra works better!
1
@Shari C Wow-the essence of capitalistic greed and disdain for the customers. Good for the shareholders however.
When I see multiple ads for drugs like Restasis on tv, it reinforces my belief that Big Pharma is spending tons of money on marketing but claiming to spend it on R&D. Recently, at a House panel, a 70 year old women told congress about a cancer drug she was taking at a debilitating cost for her. The republican from Michigan said "the company had to spend money on R&D." But a spokesperson from a non-profit countered that the drug in question had been developed in the 1950's and the drug company had simply acquired it.
30
@R. Anderson
I use Restasis twice a day, every day and I am very thankful for it. It has made a significant difference in the quality of my life. And although they were once very common I haven't seen an ad on tv for Restasis in a very long time. There are real and serious issues with big pharma, but I'm not sure what your rant has to do with this article.
4
@jim
R. Anderson very clearly made her point about "the real and serious issues with big pharma" that they falsely claim to be charging high prices for R&D. Your attempt to discredit the point by saying that there are no longer any tv ads doesn't even contribute to the conversation.
18
@Cara
This "conversation" isn't about the problems with big pharma. I would say sidetracking the conversation from one about the diagnosis and effective treatment of Sjogren's to a discussion about your complaints with big pharma is what doesn't contribute to the conversation. In fact, it's a conversation ender.
1
I have polymyalgia rheumatica and hydroxycholoquine was a gain changer for me. it gave me back my life after decades of figuring out was wrong and years of horrible steroids.. Auto immune disorers don't get enough attention and most doctors are at a loss. Sadly, my family has numerous auto immune disorders. Glad to see this article.
23
Know why else it’s imperative to get earlier diagnoses? Babies born to mothers with this illness are at increased risk of being born with congenital heart block, requiring some to be put on a pacemaker as soon as possible once delivered. The risk is greatly reduced by the mother taking Plaquenil for several months prior to conception and up until delivery.
My diagnoses came at 31 after previously uncovering narcolepsy but with additional unresolved symptoms. The biopsy, while painful to me, was efficient in determining I have the disease. Thankfully, even though I didn’t learn about it until eight weeks into my pregnancy, I had a stellar OBGYN team and they did monitoring weekly to ensure the best possible outcome. My daughter is beautiful and her heart is perfect.
I have been able to track the onset of my disease start to twelfth grade. Stressed about post-secondary pressures on top of other things, I attempted to go vegetarian (which meant to me avoiding foods, not replacing them) and led to mono. This began the almost permanent exhaustion. When I had mono again ten years later, I had to fight hard to get testing and answers.
Thank you for giving a voice to this debilitating disease.
21
@Siobhan Kellar ME/CFS (also known as chronic fatigue syndrome, though it's a misnomer as it's far more complex than that) can be triggered by mono, or more precisely. the epstein barr virus that causes mono. If you are exhausted for a long time after getting mono, I would DEFINITELY (!!) look into ME/CFS symptoms and see if you fit the criteria for diagnosis. Also watch the documentary on ME/CFS called UNREST.
6
@A Foodie studies show those with ME/CFS have a high tendency (around 75%) to also have Sjogrens
3
@Siobhan
My daughter was born with full heart block. I didn’t know that I had Sjogren’s when she was born. The heart block nearly killed her because she has an inherited heart arrhythmia too. Good information to know if you’re planning to get pregnant.
2
A drug not mentioned in this article that often does help with brain fog and fatigue is LDN (low dose naltrexone).
I'm amazed it is not the first line of defense for SS patients. Alas, it is an off-label use for an older drug, so the healthcare industry has no incentive to run any clinical studies. That said, there are Facebook groups with over 30,000 members that swear by it, even though many rheumatologists have never heard of it...
19
@Maury - Yes, you are so right. I take LDN and it helps me. I think it is a wonderful option to have.
8
@Maury
It helps some people, but not others. Possibly worth a try. I'm in an online Sjogren's chat group. Some success stories, but several of us who tried it had it backfire and got sicker, even starting carefully at low doses.
The biology and subtypes of Sjogren's is still not well understood. Lots of different reactions to medications and diet, etc.
16
"In lieu of a $750 heat treatment to stimulate her eyes’ oil glands, she found a $10 device on eBay that does the job and which her doctor approved."
Can someone please tell me the name of this device?
Thank you.
44
@Marina- I'd like to know this as well. Hopefully the author or a commenter will let us know. It sounds like something akin to a Lipiflow device.
3
@Marinamj Yes. The Lipi-Flow people use for dry eye costs $1,600. It is a necessity for people with severe dry eye with or without this disease.
5
@Marina: It's an electric silicone toothbrush (very soft). Comes with USB charger from China. Code numbers I have are @82226@1046336. After it's fully charged, dip it in hot water (not too hot for eyelids, tho) and turn it on edge of eyelid. Repeat dipping in water to keep it warm. It vibrates.
9
The maximum dose of hydroxycholoquine is 5mg/kg/day to avoid retinopathy. It is taken only once per day.
I am a family physician and have lived with Sjogren's for 10 years. I have a lot of fatigue and neuromuscular pain and symptoms of weakness, tingling, twitching and twinges. I can't run more than 50 feet. My memory and concentration are affected. Sometimes my brain just gets tired. Of course there is the dryness of eyes and mouth. It is hard for me to describe the symptoms well and I am a doctor. My advice to others is to keep detailed records of all your symptoms and the medications you take. Try to describe symptoms to the best of your ability which is often difficult. Then participate in research and use the link below...
https://www.arthritis-research.org/join-research/joining-ndb-research-other-diseases
These are people who want to listen to our stories and try to figure out what is going on. I have learned so much from being sick myself and I listen to my patients, write detailed notes and stick with them. These diagnoses are very difficult to get right but staying with the patient is a treatment in itself and sometimes it takes time for the disease to declare itself and for us to figure out what is going on.
Most importantly, get yourself a support group. We all need to share our experiences and know we are not alone!
48
@Susan Nagele - my husband also has Sjogren’s, with neurological and fatigue symptoms very similar to the ones you describe. He was given a preliminary diagnosis of ALS by a neurologist, and told to come back in 4 months. Given his history of severe allergies, and no evidence of muscle weakness, I asked the neurologist at his next appointment if blood work to check for auto-immune antibodies would be in order. The neurologist was reluctant, but agreed. When the blood work came back positive for Sjogren’s, we asked for a referral to a rheumatologist. The neurologist refused (through his nurse). We gave up working with local providers and went to Mayo Clinic for a second opinion. They concurred with the blood work: not ALS, but Sjogren’s. Three years later, he’s doing well for the most part. A very eye-opening, and sad, and frustrating, experience.
25
@Susan Nagele Firefox says the link you cited is under attack. Be careful! Maybe notifiy the group's webmaster? Thank you for your comment, though. I am in the diagnostic phase and get tired of doctors, etc.
1
Wonderful to see Sjogren's Disease mentioned in such a well-known, well-read newspaper. Many thanks to Jane E Brody. Now we need physicians to work together to acknowledge the severity of this serious medical problem. I'm a patient at a large university hospital, but it doesn't have a co-ordinated Sjogren's Department. It's very difficult to get doctors to communicate with each other (although they have My Chart access) so in order to get all physical problems covered it means appointments with 6 or 7 different doctors. Testing negative to the usual Sjogren's markers doesn't make life any easier - and many patients' tests are negative. With fatigue, joint and muscle pain, eye problems, shortness of breath etc. etc, every appointment is a challenge. The Sjogrens Syndrome Foundation, The Smart Patients Team, and Dr. Sarah Schaefer's site www.sjogrensadvocate.com, have taught me more than any physician ever has, and I highly recommend these online sites to anyone looking for information.
31
My Sjogren’s was diagnosed about 10 years ago, but I definitely had symptoms many years before the diagnosis. I also have ulcerative colitis, another auto immune disorder. My worst symptom is neuropathy in my feet, and I can no longer walk very far or very long. I have pain in my feet and joints and episodes of fatigue that are beyond normal tiredness. Because Sjogren’s affects so many systems, treatment tends to be fragmented at best. I have a rheumatologist, neurologist, cardiologist, gastroenterologist, orthopedist,dentist , gynecologist, pulmonologist, hematologist, two eye doctors,and an ENT. My primary care doctor is great at trying to herd cats, but it is just hard keeping track. It’s rather like the parable of the blind men and the elephant with everyone looking at one little piece of you.
I have a medical history and revise it, each time I add or subtract a medication, or have a surgery. I keep multiple copies with me at all times. Having Sjogren’s is is a full time job, and not a nice one. Thank you for bringing this nasty illness a little more exposure , and if you find out the name of Venus William’s rheumatologist, please pass it along.
32
The metaphor of the elephant and the blind men is spot on: that’s exactly what it’s like trying to have any autoimmune disease diagnosed or treated in our heavily silo’ed healthcare system.
5
@Citizen your sjogrens symptoms sound a lot like mine. 250mg of boswellia serrata 3 times a day has done wonders for my colitis (immediately) and my joint pain (after about 6 weeks). I also take MSM (sulfer), 2000mg twice a day, which helps my joints, skin nails and hair. Supplementing with 10-20 mg of DHEA, pregnenolone, and bioidentical estrogen, progesterone and testosterone has helped everything. Eye plugs in my tear duct drains have helped tremendously, and I wish I had done that sooner. Also my first Rheumatologist did not prescribe cevimeline, which is a no-brainer for sjogrens. It makes an amazing difference in helping to keep everything moisturized. I take plaquenil twice a day, and that is a great med! I have worked so hard to get my "normal" life back after my diagnoses 16 years ago, and I am real close! This disease is much more that dry eyes!! Nobody will help you figure it out. I have done so much research to help myself. I thank god every day for the internet which made my research and all the answers I have found possible. I have been my own trial and error lab rat. I had a stressful professional job, was the main breadwinner in my household, had two daughters, aged 4 and 7.
I had to figure it out. I was so sick, I would have eaten magic dirt if someone said it would help me. Good luck and keep trying!
3
I'm just thrilled to see the NY Times raising awareness of Sjogren's, the 2nd most common autoimmune condition . . . that nobody has every heard of.
Two comments: It is more accurate to state that fatigue MAY be controlled by reducing stess, not "can be." "Can be" implies a given - controlling stress WILL control fatigue - when it is far from a certainty. Many (most?) times, our stress is caused by fatigue, not vice versa.
Second, it's inaccurate to state that lymphoma is "the worst possible consequence." Increased Sjogren's mortality is also associated with vasculitis, pulmonary involvement, and other Sjogren's complications. The patient with Sjogren's lung disease that endangers his/her life considers THAT the "worst consequence" as compared to the patient who has "indolent" (just sits there) Sjogren's-associated lymphoma. One fellow patient in a Sjogren's support group indicates about Sjogren's, "I have had lymphoma and, while it was horrible to go through, it was treated and is a distant memory for me now. Worse for me is the progressive, never ending dental woes and unpredictable fatigue. . . . other organ involvement, for me digestive and lung issues."
I'd prefer omitting the value judgment and, instead, noting possible serious complications of Sjogren's, including neurological, pulmonary, gastrointestinal, renal, vascular, and, oh, yes, lymphoma, several of which are associated with increased mortality and vastly decreased quality of life.
50
@Rebecca i agree. i have considered suicide but i cannot do that to my family although I feel like a burden and my parents are now in their 70's. I have a very low quality of life. After 5 years, my dentist finally believed me. he did research and decided to become an approved provider for Saliwell that makes the device I mentioned from Isreal. He told me he could not believe people were considering suicide just from the oral conditions related to this disease. He found that online and he is just the dentist that cleans my teeth. I have 2 other specialized dentist specifically for sjogrens.
6
Thank you for so clearly stating what the article did not. I would also point out a common misconception amongst family, friends, the general public, and even some physicians, which is the fact that many of us diagnosed and suffering with Sjogren's, other autoimmune diseases, and fibromyalgia "look healthy and therefore, "must feel well." Looks can be deceiving! Weren't we all taught as children not to judge a book by its cover?
Yes, I have spent the last two years healing myself through the way I eat via Keto, and now via carnivore also known as KetoAF. Keto Animal Foods--emphasize on whole foods rather than processed foods, primarily grass-fed/finished beef, fatty wild fish, eggs, whole milk cheeses, grass-fed butter; and, no sugar no grains, which resulted in losing 100 lbs, and "looking healthier." However, my immune system continues to attack my body, most friends and family continue to think I am healthy because of the way I "look." Like most of us with Sjogren's, which is a serious multi-systemic disease, I do a good job of looking healthy in public. However, I will never let you into my home to see all my prescription medications, the vitamins and supplements, or all the multiple over-the-counter skin care lotions and moisturizers, creams, eye drops, eye gel, hair care products and more that I use to "look healthy" when I am out in public.
4
Thank you for raising awareness about this grossly under-diagnosed and often ignored autoimmune disease. It's important for readers and physicians to know that the neurological manifestations of Sjogren's can appear up to 10 years before the dry eyes and dry mouth become problematic. This is well documented in the medical literature.
The author notes that most women who have Sjogren's are around the age of menopause. That is the consequence of using diagnostic criteria that identify late stage Sjogren's patients who already have obvious gland damage leading to the symptoms of dryness. There is a growing number of clinicians and researchers looking for Sjogren's in younger neuropathy patients, and finding it abundantly.
I am one of those patients. I was diagnosed with Sjogren's after an acute onset of autonomic and sensory neuropathy at age 31. With 20/20 hindsight, it's clear that I had many symptoms of Sjogren's since early childhood, but no dryness to trigger a Sjogren's work up by my doctors. When you talk to woman who are diagnosed with Sjogren's around the age of menopause, they often recount unusual immunological and neurological symptoms from the time of adolescence.
We need updated diagnostic criteria that can help identify Sjogren's earlier in the course of the illness, when we have a better chance of preventing permanent gland and organ damage.
44
@Lauren Stiles thank you for all you do. I follow you online on FB as well and appreciate the wonderful info. I too suffer from autonomic issues, my diagnosis is CNS Sjogren's and I can remember strange symptoms as early as 10 years old. As an adult I slowly lost my career and my health deteriorated until I was housebound and bedridden. After spending 3 years with an MS diagnosis I developed dry eyes and eventually my neuroimmunoligist realized my combined dysautonomia, trigeminal neuralgia, myelitis and neuro symptoms fell under Sjogren's umbrella. When I had an MS diagnosis there were great info hotlines, sponsored events, dinners, assistance programs, etc and although in my opinion Sjogren's has been worse there is much less knowlegde where doctors are concerned as well as awareness and resources. You are a bright light, thank you!
17
@Marissa I would highly recommend you look into ME/CFS because dysautonomia, trigeminal neuralgia, myelitis and neuro symptoms all fall under its umbrella. Reading this comment, it sounds a LOT like ME/CFS. And often people with ME/CFS get misdiagnosed with MS.
2
Thank you, Jane Brody, for raising awareness of a disease that has gone misunderstood for too long. I hope your column will educate not only the general public but will also reach some portion of the medical profession, which has generally dismissed Sjogren’s with a mere nod to the symptom of a dry mouth.
As a Sjogren’s patient, I’d like to request a Part II of your most recent article. I think your readers need to hear more about how Sjogren’s impacts patients’ quality of life. Write about the fatigue, which isn’t like the tiredness that most people associate with sleep deprivation. Our fatigue can limit every aspect of our lives. I have met young mothers with Sjogren’s who can’t play with their small children, much less participate in school activities or social events. I have met new teachers with Sjogren’s, who never finish their first year because Sjogren’s has cut short their career. Sjogren’s athletes must often give up their sport, sometimes in their prime.
You can be our voice. We who suffer from Sjogren’s have what is called an “invisible illness.” We look okay, but we aren’t.
So many of us would like to speak out to raise public understanding about this illness that nobody can even pronounce. We long to rally for earlier diagnosis, more research funds. But often, we’re far too compromised to be our own advocates. Thank you for writing on our behalf. We look forward to your next Sjogren’s piece.
52
Well said, Carol! Thanks for articulating these important thoughts so powerfully.
13
@That is a wonderful idea. Without public awareness there is no research. There is only one med for Sjogren's and I can't take it.
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@Carol
Yes, wonderful points. I would love a Part II that explains:
1. Sjogren's is not rare, just rarely diagnosed. Lowball estimates like Dr. Criswell's are based on registries, not true numbers. Most patients are undiagnosed. Sjogren's is probably about as common as RA, impacting about 1 % of the population. As the article illustrates, it is hard to diagnose. Many patients are misclassified, dismissed, psychologized or told they have fibromyalgia.
2. Quality of life is often profoundly impacted. This is well documented in studies. Severe fatigue and widespread pain create are often the biggest priority patients have for treatment. Yet these core manifestations get little attention from clinicians and researchers.
This disease has demolished any semblance of a normal life for me. I can no longer work as an MD. I lost my career and was unable to do many things with my children growing up. There is so much I want to do, and simply cannot due to physical limitations. Like most Sjogren's patients, I look well.
Sjogren's is so much more than dry! I have visual impairment, widespread muscle pain, and painful neuropathy. But more than anything, the fatigue is relentless and does not respond to dedicated lifestyle interventions, including Qigong and meditation. We need better treatments. Our doctors need to become better educated about the disease.
36
As a Lupus patients, I and many others also suffer from Sjogrens syndrome. Sometimes my eyes feel like they are covered by eyelids coated in cement and my mouth gets so dry it rivals the Sahara desert. I would also like to add anyone who is on medications to suppress their immune system can develop many types of cancer as I developed Merkel Cell Carcinoma.
9
Thank you for a very useful article about such an (to most of us) unknown disease.
I wake up a couple of times during the night with a very dry mouth and not any of the other symptoms. I was hoping Jane Brody would mention something I could take to relieve it.
Biotene helps some. My doctor says it's a part of 'aging.;
3
@Richard ask your doctor for Cevimeline. It helps all dryness issues!
I agree that Tufts Dental Medicine is a wonderful clinic. Dr. Mabe Singh made my diagnosis and continues to monitor me. Additionally he is the advisor to the Boston area Sjögren’s support group. I’m also seen by Dr. Eli Miloslavsky at the Mass General Hospital rheumatology clinic and Dr. Farhad at the neurology clinic there, both knowledgeable about Sjögren’s. Add to the mix, urologist , gynecologist, gastroenterologist, opthamologist, dermatologist, dentist, and gerontologist. It’s a recipe for doctor fatigue. I have had to piece my medical team together mostly through self advocacy but have found knowledgeable, compassionate medical professionals to help me along. The polypharmacy I am dealing with is ridiculous. The disease is unrelenting and always percolating just under the surface of my daily life.
17
Thank you for writing this article bc I think most patients & doctors/dentists do not have much awareness of this autoimmune disease, which in my case took years to uncover.
I am an example of worst case scenario where a fractured healthcare system isolated both recently diagnosed Sjögrens & ongoing dental decay & root canals that were followed by infections.
At the start of my medication routine of corticosteroids + Plaquenil, along w 4 different antibiotics to treat dental infections, I contracted an antibiotic-resistant stomach infection that has ruined my day-to-day life.
Clostridium Difficile is usually contracted in hospital by inpatients who are exposed to this infection after a procedure.
I, unfortunately, contracted it while caring for my mom who was in hospital after spinal surgery.
No one had told me that I was immune-compromised.
Im still dealing w extended debilitating symptoms having contracted the infection in early 2015. My diagnosis did not happen until Aug/Sept 2015 — even after seeing many specialists to figure out why I couldn’t leave my apartment due to pain + constant diarrhea along w weight loss which brought me down to 76 lbs.
I Agree, our healthcare system is completely fractured.
25
It took me 6.5 years of repeatedly visiting different doctors and being in chronic pain for most of that time before I got diagnosed with Sjogren's. Every doctor I saw dismissed my concerns and/or gave me medications that treated my symptoms. But no doctor had the time and/or inclination to piece the seemingly disparate symptoms together to find the underlying root cause.
I have a PhD in Nutritional Biology. I spent countless hours searching the scientific literature and scouring the internet, and piecing together my symptoms and family health history was able to insist on having specific blood tests run so I could arrive at a diagnosis. After being diagnosed I was just told to use eye drops and stay hydrated. I was not alerted to how serious Sjogren's is. It is only with the advocacy of the Sjogren's Foundation and through people like Dr. Sarah Schaefer, an MD with Sjogren's (www.sjogrensadvocate.com) that I have learned how seriously I need to take my condition and how to take care of myself appropriately. The whole process was emotionally devastating and fatiguing (on top of the severe fatigue, which, by the way, is not always resolved by reducing stress).
Not everyone has the education, confidence, skill sets and resources that I had available to me to push for a diagnosis. More research on Sjogren's is needed and the medical community needs to know that this disease is common, presents differently, and is not just dry eyes and dry mouth. It can kill you.
41
Much information is available through the Sjogrens Syndrome Foundation. Along with an online support group and web resources, they provide a comprehensive guidebook and a monthly periodical, which provide vital information and updates about Sjogrens. The annual Sjogrens Disease conference (it is now qualified as a disease) is held annually. The funds from this organization work diligently through research to conquer the myths and lack of knowledge about this devastating disease.
18
@Ann
Yes, the Foundation is wonderful.
Their info is reliable and up to date, and backed by a medical board with deep experience and expertise.
One thing the article / Dr. Criswell states that I strongly disagree with is that Sjogren's impacts 3-10/ 10,000. Those low numbers are based on Sjogren's registries which require reporting which few MDs do.
We know that more than half, and probably 3/4 or so, or Sjogren's patients remain undiagnosed, misdiagnosed or misclassified as another autoimmune disease.
Numbers probably range from o0.5-1 % of the adult population, mostly women. Most Sjogren's experts in recently published articles agree with this ballpark estimate. Sjogren's is not a rare disease, just rarely diagnosed!
21
I am surprised there is no mention of the famous athlete who returned from an early retirement to once again compete at the top level after learning to keep the Sjogrens under control.
Venus Williams was diagnosed some +/- 7 years ago and unable to compete with any regularity for some 5 +/- years. Once she became Vegan she was able to return to the highest level of tennis competition though age had by then caught up with her.
My own journey is based on the remarkable improvement of my RA symptoms going from a Pescatarian to a Vegan diet. The author of "How Not to Die" M. Greger MD also has this: https://nutritionfacts.org/video/sodium-and-autoimmune-disease-rubbing-salt-in-the-wound/ on his site 'Nutrition Facts.org'
There is a fair amount of info on other diseases of the immune system, so baffling because essentially the body attacks itself! It seems that a Whole Food, Plant Based diet once again might be an answer and wonder of wonders there are NO, Zero, Nada 'side effects'! Instead of adding more pills, what could be the harm? As you will see w'any indepth study there is no half way here, it is the changing of the gut bacteria w'the complete lack of animal foods and the drawback 'may' be living w'out steak, or bacon, or cheese or?
9
@Karen i have been vegan since i was 4 years old. i am now 47. i have tried macrobiotics, raw foods diet, juicing, any alternative treatment out there. i often miss dinner because i am asleep. i exercised 4 times a week before this hit me hard at 36. Then I still tried to continue my yoga, but even that got too much for me. there are varying levels of sjogrens and for Venus to come on and say that healthy diet and exercise was helping her "get back on top" hurt our cause more than helped. it sounded to me like those of us who are severely sick are not trying enough. I would like to know what her doctor is doing because I have even been to Johns Hopkins and they could not help me. They said I should be tested for allergies, try IVIG,
or Rixumiab. Since i have been diagnosed "borderline sjogrens" insurance will not pay. I have a positive ANA and a "borderline lip biopsy, elevated ESR, my oil glands are severely damaged, I do not make saliva unless my mouth is stimulated, debilitating fatigue, joint and muscle pain, constant dry, gritty, burning eyes, difficulty talking, chewing, and swallowing. my lips crack and peel. Yet, I'm told I have "borderline sjogrens"?? I am scheduled to see yet another rheumatologist in October. Digestive problems because I can't chew well. My current doctor said she will not try a biologic because my organs have not been attacked.
9
I’ve been a vegetarian since I was 16 and a vegan since I was 21. I am now 40. Please tell my severe Raynaud syndrome, arthritis (JIA), and probably Sjogren syndrome that they were supposed to be cured by my diet.
My mother has lupus, her cousin has severe debilitating RA, my great aunt had mixed connective tissue disease. My 13-year-old son recently developed Raynauds in his toes. I can’t cure my genetic predisposition with a vegan diet.
What does help? I run about 30 miles a week (which works for *me* and may be impossible for others), I take my medicines, I do whatever I can that makes me feel better. I’m a vegan because I believe it’s best for the planet and my own personal morality, but the idea that a plant based diet cures all ills is untrue and places the burden or blame of disease on the sufferer, who according to this myth could be all better if only they’d adhere to your preferred lifestyle or diet.
1
We need more research and testing. If you listen to patients, their fears are not focused on the possibility of lymphoma so much as the certainty of living 30, 40, or more years with debilitating fatigue, joint pain, and dryness, along with other systemic pains (many suffer GI complaints, pulmonary issues, and other systemic symptoms). There are few effective treatments, so patients treat symptoms and hope for relief. More research (similar to that done on MS, ALS, and other life-altering diseases) to help the 400,000 people suffering from this disease, and increased clinician education, is needed to provide that relief.
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@Beth Erwin
My Sjogren's was diagnosed four years ago. I agree that lymphoma is not at the center of most patients' concerns.
7
@Beth Erwin - Sorry, meant the MORE than 400,000 people....
2
Can Sjogrens be Unilateral? My left eye and left side of my mouth are painfully dry. I use 5 tubes of eye gel to get thru the night and my left side of my mouth sometimes sticks to my gums.
I saw a Rheumatologist at a University medical school, and her comment was to just treat the dry eye and mouth," why bother getting lip biopsy". I didn't want to (sounded painful) so I followed her advice.My blood work is normal which I have read is a rule out for Sjorgrens.
The Left eye pain wakes me up at night and can be unbearable. I also have unrelenting exhaustion, GI disorders , NAFLD (not overweight) and had to retire. This all started after hysterectomy in my 40's. I have no life.
Thoughts?
4
@Chelsea Have you been checked for autoimmune liver disease (PBC and others?)
2
@Chelsea:
from a retired RN who also has Sjogren's......see another doctor or doctors asap. Preferably a rheumatologist.
6
@Chelsea Normal bloodwork does not rule out Sjogren's. A biopsy is the better test. I had years of neurological and sicca symptoms, and for years I was brushed off by doctors. I had normal bloodwork. I insisted on a biopsy and tested positive. My rheumatologist discouraged the biopsy, since there is no cure for the disease. I believe it's important that my health be viewed through the lens of Sjogren's. I don't regret getting the biopsy and a proper diagnosis.
9
I had a similar experience in getting diagnosed with another autoimmune disease called Limited Scloderma. I had Raynauds for a year, then quite suddenly hand pain and swelling. Physical therapy was recommended by my Dr. (who I happen to work with as an R.N.) I had to bug him numerous times before he did the proper testing. My point is that some of these autoimmune diseases mimic other age related illnesses/conditions and are difficult to diagnose. I agree with Christine about not giving up when you know something is going on inside your body. Would like to see more articles on these.
13
@Kath
So you had tests, then what?
3
@F Varricchio
Have an appointment with a Rheumatologist in a couple of weeks.
1
Thank you for this article! I have Lupus and Sjogren's and it's truly awful. I probably had Sjogren's for close to 10 years before a diagnosis. Having already been on Plaquenil for many years for Lupus, the treatment is not very different other than adding Xiidra 2x/day and constant OTC treatments to manage symptoms, including Xylamelts and lozenges and artificial tears that I need every couple of hours as well as ointmnet for my eyes at night. And that doesn't include terrible pain and fatigue and digestive problems. Currently in a flare, and it's a real struggle. When the fatigue is better, I want to do so much more. Then...wham.... a flare and it takes everything to manage basics at home. So much more can be done (by insurance companies) and workplaces to accomodate this very difficult systemic disease that is often invisible. Thanks again for highlighting Sjogren's and autoimmune diseases and the difficulties in diagnosis and management.
36
Thank you for shedding light on this common, but very misunderstood disease.
I started getting symptoms in my 30’s and it has now been 11 years. It took me over 3 years and 5 rheumatologist to get an accurate diagnosis. Before my diagnosis, I was told that I was exaggerating symptoms, was a hypochondriac, and possibly had conversion disorder (a psych diagnosis).
Less than a year after becoming symptomatic, I had to stop working as a pediatric registered nurse, a job I loved. The organ complications are real. Besides my eyes and mouth, I have had at least 5 other body systems affected by this disease.
The most important thing is to advocate for yourself. I had to do a lot of hard work, upset a lot of people, and shed a lot of tears to establish a medical team that supports me and knows how to manage the illness and the complications that arise from it. If you think something is wrong with your body, keep at it and don’t give up
42
I was scolded at dental check ups for many cavities as a child. Missed school for upper respiratory infections and GI difficulties. Rosacea & Raynard’s and a physician who thought I was a “strep carrier”. Another thought small pox due to abundant canker sores. I lived on ice chips & swishing a concoction of Malox & liquid Benadryl for a week. Asthma, allergies & food intolerances. I gave up gluten & dairy, my migraines & abnormal Pap smears disappeared, but the fatigue was always there.
Mid 30’s without health insurance my symptoms were dismissed as stress. Antidepressants and anti anxiety meds were prescribed or when those failed I was dx as probably bipolar.
My late 40’s a dermatologist noticed my purple fingertips, elbows & malar rash across my face & chest but a general surgeon tried to refuse to do a deep tissue biopsy because I was too young and looked too healthy. I was diagnosed with Dermatomyositis. 6 years later asymmetrical hearing loss, dizziness & severe tinnitus, labs diagnosed Sjögrens. My Rheumatologist said I’d probably had this my entire life. Scleritis, Endometriosis, Costochondritis, malabsorption of nutrients due to Idiopathic Gastroparesis with complex IBD, and now Cricopharyngeal Dysfunction. The fatigue is everyday and unrelenting.
61
I was diagnosed a few years ago with Sjogrens Syndrome. Dry mouth is one of my biggest complaints. I see my dentist right now every 4 months. Some products that I use that have been helpful include: Prevident toothpaste (prescription), Act Dry Mouth floride mouthwash, and ACT Dry Mouth lozenges. Regular sugar-free lozenges or candies cause my teeth to be more sensitive. I also take Plaquenil but don't really feel like it helps with my joints or not. Recently, I have also tried the Auto-Immune Protocol diet. I had heard that auto-immune issues can be caused from your gut health and figured it was worth a try.
My heartburn is gone, my digestive system is now working as it should, I have more energy and I even lost some weight as an added bonus. Although this diet hasn't cured my dry mouth, it has helped me identify some of the foods that can trigger symptoms so they can be avoided. Sugar is a big culprit for me along with breads and grains. But even certain spices can cause my mouth to be even drier. Overall, I am learning more about how to fuel my body to feel my best. There are several books about the diet on Amazon if anyone is interested in giving it a try.
26
@Nay
I was half-heartedly tested for Sjogrens a few years ago; came back as a no, but as things flare and settle, flare and settle, I really wonder if testing was definitive.
Just a real roller coaster with the mouth, the eyes, the skin and the gut. Absolutely some auto-immune stuff going on, really escalated to a zenith once off of HRT and into menopause unassisted. How I miss my HRT!
Thanks for the tip about the lozenges; will have to get some of those.
I use the rinse already (and do the Rx Prevident toothpaste also) -- though I was out of the rinse for a period over our bitter winter earlier this year (I have difficult getting out) and now I'm afraid to to see my dentist, because I think my teeth really took a hit.
And I don't think I could survive a big load of dental work ... really would rather expire first.
But I know I will have to get in there one of these days and get a check-up ...
The diet type / name is new to me, and I will also look into that. Probably a 'no fun' diet ... then again, all these obstacles and other limitations are not fun either.
Thanks for posting all this insightful information.
3
@jazz one ask your doctor for Cevimeline!
At age 58, I've probably had Sjogren's for at five years. At that time, yearly ophthalmology visits showed dry eye but further testing was not suggested. In May I was dxd with Sjogren's by accident (and tenacity) after enrolling in a study at a major world-renowned Minnesota clinic to compare MRE to biopsy for NAFLD. I didn’t have PBC, despite NAFLD that progressed to Stage 1 NASH, but it found positive ANA, mild to moderate aortic regurgitation, a 4.1 cm ascending aortic dilation and homogenous for factor 5 Leiden. They did not recommend follow-up on the positive ANA -- just cardio and neurology (2spinal hemangiomas). I asked a local neurologist for ANA titers, which showed positive anti-nuclear AB, anti-SSA Ro (Sjogrens), anti-chromatin and speckled and homogenous patterns. Finally got into Rheum (long wait) who dxd Sjogren’s with possible multisystem involvement (discoids from sun, petechia, weird bruises, joint/muscle pain/twitching). Recently I asked my primary about primary vs. secondary Sjogrens, swollen lymph node under my ear and slightly low lymphocytes from the last 3 blood tests. She declined ordering more tests. Rheum revisit in Dec so will insist I guess. The upshot is this rheum prescribed 4.5 mg Low-Dose-Naltrexone, which I initially refused but after research on its efficacy with autoimmune, decided to try. I can’t tolerate that dose, so I dilute the capsule and take .5 ml every other day, compounding the compounded pharmaceutical. Helps with pain/fatigue.
11
As a physician no longer working due to severe Sjogren's, I continue to be appalled at the lack of knowledge about this common, serious, systemic disease. Most PCPs and too many rheumatologists hang on to the long-outdated notion that Sjogren's is mostly a nuisance dryness disease. Medical education at every level neglects Sjogren's. The ACR downplays systemic features, further reinforcing "Sjogren's neglect." The result: long delays in diagnosis and suboptimal care.
Quality of life is severely impacted for many, if not most, of us. Overwhelming fatigue often means losing careers and activities that are central to living a good life. This fatigue is not just feeling tired. It is pathologic, flu-like and relentless. Yet we tend to look well, even when we feel very ill. Being mostly a disease of women, core Sjogrens' features such as fatigue and widespread pain are often written off as depression, anxiety or stress. In other words, women are often blamed or psychologized.
Sjogren's can impact every organ system in the body. Neurologic features are common and underdiagnosed. In case you are wondering, yes, Sjogren's can kill you.
Research lags far behind similar diseases. It is time for rheumatology leadership to step up to the plate.
Read more about the disease from this reliable source, www.sjogrens.org. Practical help for PCPs and patients can be found at my website, www.sjogrensadvocate.com.
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@Sarah agree
4
@Sarah, As a fellow Sjogren's sufferer, I applaud your comments. You are an extremely knowledgeable and dedicated advocate within the national Sjogren's community. I urge New York Times readers to explore your website, the most clear and current Sjogren's resource I know.
10
Sjögren's Disease has even robbed me of my username. Am now unable to continue my dream vocation of teaching children after this Sjögren's Tsunami hit, full force, literally knocking me off my feet.
During the past two decades, I traveled from PCP to specialist after specialist, receiving contradictory assessments, despite positive blood work, severe, on-fire 'dry' eyes, episodes of Bell's Palsy and nerve pain, declining health, etc. Still, I persevered. Then, the tsunami hit and within months, I went from climbing the Grand Tetons to trying to manage stairwells.
While always fit and health-conscious, I am now willing to try anything in my rheumatologist's arsenal with the hope of halting the progression of this unrelenting disease which is now attacking my nervous system at its root.
Like millions of others, my life and those of our families, are desperate for increased funding for research and increased education amongst the medical community. There should also be far more places like Johns Hopkins and Oklahoma Medical, as Sjögren's spares no organ.
Thank you for shining the light on Sjögren's - a serious, multi-systemic, excruciatingly painful, disabling disease. Dry eyes and mouth are simply the tip of what can often be a deadly iceberg.
PS Please forgive my choppiness -- had a Rituxan infusion today, and how my heart sank to see school buses back on the road.
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Nobody knows what causes flare ups. The article says they can be controlled by reducing stress. I have seasonal flares; no stress involved. I've been keeping track for fifty years. Autoimmune diseases are still one of medicine's great mysteries.
Reducing stress is a good idea for everyone. But you can meditate, be calm, etc and you will still flare.
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Its definitely time to stop blaming physical illness on “stress”!
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@Klara:
its mostly a "woman's disease" and we KNOW women get blamed for their symptoms and illnesses.
No, its not stress related and meditation won't help. Try to find a rheumatologist who is up to date and open minded.
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@RLiss
True situational stress triggers my flares, so I would not so quickly dismiss concerns about stress.
2
One reason Sjogren's is so hard to diagnose is that there is no 'gold standard' test for Sjogren's. I started having symptoms when I was eighteen. Symptoms waxed and waned but when I was thirty one I became critically ill. That was fifty years ago.
The biopsy mentioned is only correct fifty percent of the time. I, like many others, am seronegative, meaning my labs are usually normal. I had a maternal aunt with the same profile.
I was fortunate to see a brilliant rheumatologist who was ahead of his time. He gave me a clinical diagnosis and told me it was a very serious disease.
Dr. C. Stephen Foster was the opthamologist who saved my corneas. He was the twenty fifth opthamologist I saw at Massachusetts Eye and Ear in Boston. He now has a practice in Waltham, MA.. Dr. Athena Pappas who runs the oral medicine clinic at Tufts Dental School
I am more afraid of lung involvement than lymphoma. I already have a circulatory problem that may affect my heart.
The fatigue is brutal. Nothing has helped that. Other symptoms waxed and waned. The fatigue never left.
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@Klara
I could not agree more about the fatigue being brutal. I lost my career as a physician. I could barely care for my children when they were growing up due to extreme fatigue and other systemic manifestations. Our medical system reflects our culture which values lifespan over "healthspan." Symptoms such as fatigue and pain, no matter how debilitating, are easy to ignore when there are no lab tests to measure the symptoms. Yet these core features are the biggest priority of most Sjogren's patients.
Most of us are women. Gender bias probably plays a role in ignoring the disease. Male Sjogren's patients get neglected along with us.
Based on my teaching experience, I have concluded that most physicians have no idea that Sjogren's can kill you. Direct manifestations are the cause of premature death in about 10 %, indirect manifestations (comorbidities such as infection, heart disease) for many more. RA gets a lot of attention for these things. Despite being common, Sjogren's disease remains under the radar.
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@Klara I meant to write that Dr. Athena Pappas who runs the Oral Medicine Clinic at Tufts Dental School also confirmed a clinical diagnosis. If you are in the Boston area I'd recommend that you see her. She is trying to help me save my teeth. I have bone loss in my jaw from the Sjogren's.
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@Klara I feel the same way about Dr. Papaliodis at Mass Eye and Ear. He was my 3rd eye doctor and the 1st one to find out that I also have MGD which was also caused by Sjogren’s. Once we started treating that, my eyes improved.
And I also see Dr Papas. I credit her with saving my salivary glands from becoming completely destroyed...at least so far!
15
This article is useful in that it helps to raise awareness of Sjogren’s Syndrome. However it reads like Sjogren’s 101. I was diagnosed with this disease about 15 years ago and one of the first symptoms after diagnosis was Lymphoma. While it was frightening and terrible to endure cancer, it was treated and is a distant memory for me now; not, in my opinion, the worst of this disease. Worse for me is the daily and progressive dental woes and unpredictable fatigue and muscle pain that limits my capacity to enjoy activities and complete everyday tasks. Jane Brody barely mentions organ involvement, which for me so far has meant digestive and lung issues. One winter I had pneumonia 4 times. Most people who are familiar with Sjogren’s think it is as simple as dry eyes and mouth. This article does little to dispel this perception.
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This explained more about the condition than I knew.
Why would Restasis be prohibitively expensive? ( I guess that's rhetorical: because someone is making money off the branded version). Isn't it a commonly used preparation (as Cyclosporine ophthalmic) -- in veterinary medicine as well?
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@cheryl I've been taking Restasis for dry eye for about seven years. Prior to retiring it was covered by my prescription drug plan; upon retirement I was shocked to learn the price of it. I manage the costs by getting more than one dose out of the individual vials. I believe it is expensive because the company that makes it slightly changes the formula whenever its patent is due to expire. This prevents a generic form from being sold. Companies manage to keep drub prices high by doing this simple tweek.
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@cheryl
The generic form of Restasis is available from online Canadian pharmacies.The savings are very significant.
4
@cheryl- The reason that Restasis continues to be so expensive is appalling. In 2017 Allergan transferred all patents for Restasis to the "Saint Regis Mohawk Tribe" in order to shield the drug from legal challenges to the patents given the tribe's sovereign immunity. The tribe then granted Allergan back an exclusive license for the drug. Et voila, competition is thwarted and Restasis prices stay super high.
4
My diagnosis of Sjögren’s came late stage in the game.I was misdiagnosed so by that time this illness had progressed, permanent damage to my eyes and mouth as one of the first symptoms for me,besides being tired and in pain, was rapid tooth decay. In one year I went from a gorgeous set of teeth, to rotten stumps. previous dental work was falling out, my teeth were chipping and cracking.
The second was the dry eyes.I was days away from going blind because I was scratching my corneas. Lucky for me, I had an appointment with my eye doctor, he had an emergency so I had to see a different one, she happened to be an ophthalmologist and just returned from a weekend medical conference where they discussed Sjögren’s and she’s the one who recognized the weight of all my symptoms and from there, like most Sjögren’s patients, I now have a team of doctors to help manage the illness and keep me going. I waited one year to see the top rheumatologist in my area at the time who, again lucky for me, was a Sjögren’s expert and it’s because of her that I’m where I’m at today.
People don’t often see the pain, suffering and torture we live in on a daily basis. You can’t see dry eyes and mouth or feel our pain from how bad our body aches. There’s never a day that gives us rest. It’s constant and unrelentingly. It’s exhausting to fight illnesses that have no cure, no viable treatment options...but we do the best we can. Thanks for running this story and bringing awareness to Sjögren’s!
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@Jessica Gregg it was the same for me. my regular eye doctor said to me at my annual exam, " you have classic autoimmune immune look in your eyes. That was the first time someone had mentioned anything but depression, anxiety, and fibro, and the old "chronic fatigue." Shortly after I had to see a neurologist for what felt like carpel tunnel syndrome. He said "had anyone ever done an ANA on you?" After I mentioned some other symptoms. This one 7 years into this and the answer was "NO". He referred me to a rheumatologist and I was positive. When I told my primary care doctor, he said "we never did an ANA on you?" I had also complained to my gyn for years about terrible cramps and she loaded me up with prescription tylenol. Finally, i had a cyst in my uterus and she referred me to a gyn surgeon. I spoke to him for 10 minutes and he said "sounds like you have endometriosis". I had a partial hysterectomy and had severe endometriosis. I noticed they are just now showing commercials about it. I have read it is associated with autoimmune. I didn't know. so no children for me!
3
I was diagnosed with Primary Sjogrens 10 years ago secondary Rheumatoid Arthritis. I was 30 at initial diagnosis. The flare ups are real. People see me and everyone says I look okay and that is the problem with this invisible disease. The pain is real, trying to get out of bed is excruciating and so is the dryness. I am a teacher and the longer I have been dealing with this the harder it becomes. You have a medical team dealing with the chronic sinusitis, joint deformation, sand paper eyes and tongue, dental decay, onset of bronchitis, and the long list goes on. Sjogrens is debilitating and those who don’t have it are not empathetic. As of now I can not say that anything prescribed has ever alleviated the symptoms.
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@Yesseline
Sjogren's is common, serious and always systemic. Medical education at every level fails to address this serious disease. As does research.
Quality of life is often so impaired, that many, like me, cannot work or do the simple things that people take for granted. This disease needs more attention!!
34
I was initially diagnosed with fibromyalgia in 1998, without a single lab to test for autoimmune diseases. Flash forward to 2013 and the same rheumatologist ran the ANA, which was a "low positive," but he refused to test for Lupus and Sjogren's because it is "probably just your hypothyroid." Three years and a new rheumatologist later, and I was tested for these, and Sjogren's was positive. Typical treatment options for dry eyes and mouth are contraindicated for me due to other conditions, but my opthamologist found two eye drops I can use. Plaquenil worked great for my pain for 30 days, after the 3 months of horrid nausea abated. Unfortunately at month 4 I developed severe muscle pain that was more disabling than my joint pain, and the Dr. had no other options for me. No luck with a second opinion, which agreed with local doctor that the other 2 options would also cause the same side effect. I saw in my medical chart that she'd noted my MTHFR polymorphism that was the icing on the cake with that decision. I remain untreated. I wasn't expecting a one strike and you're out regarding treatment. Unfathomable that a disease discovered so long ago has so few treatment options. Oh- and be the squeaky wheel? I complained of dryness for 30 years before anyone listened to me.
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@Ellen
Wow. Your experience sounds so similar to mine.
Not been an easy road, and of course, since it's all quite 'invisible' to others, it's hard to explain or for them to understand.
3
I just crossed 70 - and I don't work any longer.
But 8n my life - I have had severe cases of dry mouth a couple of times- may be 4 maximum that lasted at least a month.
All happened when I was under a severe stress - like going thru a divorce when it seemed like the end was near.
An the remaining times when I had severe and stressful issues at work - like serious disagreement with superiors which resulted in transfers to other locations (oil patch).
But over weeks - they all disappeared when things calmed down.
Should I be worried??
3
@Neil I wouldn't worry. But if it happens again please see a dentist. Even if it isn't Sjogren's there are products that you could benefit from.
4
I can't believe I'm seeing this article today! I just left the allergist's office a few hrs ago. He worked me up; Sjogrens AB were negative, but ANA was positive. Ms. Brody forgot to mention Raynaud's phenomenon, which is a common feature of Sjogrens. My next stop is a rheumatologist!
For the itchy, dry eyes, I have found comfort in a lutein supplement from GNC that has marigold, blueberries and bilberries. You can add all the drops you want, but if the oil layer is present to trap the moisture you will still be dry.
For fatigue, try B12, N-acetyl cysteine and CoQ10 Ubuquinol, just make sure you're not on any meds or have any conditions that are contraindicated. Good luck!
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@Kismet:
please, please try to avoid seeing herbs and vitamins as "the answer".....most make claims that are unprovable, and they fly under the radar because they are (loophole in the laws) not required to be covered by FDA rules.
Many/most are "made" in third world factories with very poor quality control (meaning the useful amount of what they claim to be for may or may not be there at all, or may be double, triple.....and also roach parts and rat droppings have been found in some that have been studied.)
If you must: stick with a good multi vitamin.
11
What is the "moisturizing shield" for her eyes you are talking about? I have severe chronic dry eye and have never heard of a dr. putting a "moisturizing shield" in the eye???
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@Amanda:
years ago my then-opthamologist used one on my eyes which both had painful corneal scratches (common with Sjogrens) and they did help. I'd ask around....
1
@Amanda - that could refer to one of two things: 1) scleral lenses, basically very large contacts that can be filled with artificial tears, that protect the eye surface; or 2) goggles (sleep goggles, for example) that hold moisture around the eyes, such as EyeEco goggles.
1
I'm in my late 60's and I've been living with HIV for over 30 years so it's often hard to know what to make of any symptoms I might be experiencing. Aches and pains, fatigue? Is it just that I'm getting older, is is the HIV, is it the various medications I take regularly? I suffered from dry eye and blepharitis for a couple of years before I could get anyone to take it seriously. Then I started to have issues with dry mouth. At first I didn't think much of it. We all get dry mouth occasionally, but it became more persistent. Then I was "lucky" enough to develop swollen salivary glands. I say lucky because it was the symptom that pulled all the other symptoms together and made the doctors take me seriously. Since then I've had good results with Restatsis and pilocarpine which I'm fortunate to have covered by insurance. I also spend a small fortune on artificial tears that aren't covered by insurance. Years ago I was on some medication that caused dry mouth and I learned how disgusting your mouth can get so I'm very careful with my oral hygiene. It's important to remember that saliva and tears are not simply water. Dry eye does not necessarily mean that you don't produce tears. Many of us with dry eye produce copious amounts of tears. The issue is the quality of those tears. They aren't providing the protection and lubrication that is needed.
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@jim my eye doctor said my tears are like water running over a waxed car.
1
Am I the only reader whose eyebrows raised at reading that the Oklahoma Medical Research Foundation "runs one of the few multidisciplinary clinics in the country"?
19
Not only is there a comprehensive Sjogren's clinic in Oklahoma City, there is modern civilization - symphony, ballet, NBA, fancy restaurants, paved streets, motor vehicles, and, we think, one of the most outstanding Sjogren's research groups in the coutnry. We operate this clinic because we are desperately interested in advancing the science of the disease and because (as noted by so many of the comments) Sjogren's is very difficult to diagnosis- there is no single test, instead a compilation of everything about a given patient makes the diagnosis. There is nothing special about our eye or dental rooms, except they share a wall in the same medical office. So, patients are seen by a dentist, and eye doctor and a rheumatologist in one ~half day visit. But, you do have to consent to us storing your blood, urine, saliva and information for research - because this is part of the reason for the clinic - to collect samples for research.
25
Re: dry mouth. It could also be helpful to use a toothpaste like Biotene that stimulates saliva.
13
@Cookin I use Biotenne mouth gel at night and it works just as well as expensive meds (evoxac = cevimeline) I can no longer afford meds and I have good insurance. The price has goneup 100 fold since 2004. BUT I'm hoping the biotene does not give me cavities.
10
I agree another rheumatologist who wrote a comment, we NEVER prescribe hydroxychloroquine three times a day. And this drug is of questionable efficacy in primary Sjogren's Syndrome. It may help joint pain but not the dry eyes, dry mouth, etc.
6
I have primary SS and without plaqenil have recurrent fevers and joint pain. So it helps me a lot with just a little nausea as side effect, but many can't tolerate it or are not helped by it. The fatigue is completely disabling and plaqenil doesn't help that at all. I think the immune malfunction of SS triggers ME/CFS, as I now also have that diagnosis. Hoping to keep the kidney problems and cancer away as long as possible, and enjoy what little bits are left of my life.
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@City of Brotherly Love
After taking Plaquenil 2x/day for about 2 years for SS, and feeling lousy, I did some research and found that Plaquenil should be dosed based on bodyweight and that most people are taking too much, which can be toxic! I have cut down to alternating 1x/day with 2/day and am feeling much better overall. A 100 lb person should not be taking the same dose as a 150 lb person!
3
@City of Brotherly Love - Plaquenil is dosed by times of day, period, except possible to help reduce incidence of gastrointestinal effects. Plaquenil is supposed to be dosed by body weight.
And, yes, it is of questionable efficacy . . . . BECAUSE NOBODY, until very recently, HAS BOTHERED TO TAKE SJOGREN'S SERIOUSLY and do properly constructed studies. Sjogren's can and does kill, aside from the huge impact on daily functioning and quality of life, but is the poor stepchild of AI conditions. Until those studies are conducted (and one small one did point toward possible effectiveness of Plaquenil in preventing/slowing disease progression), patients are stuck with anecdotal evidence and, "Hey, it works for lupus, Sjogren's kissing cousin, so why not."
Plus - hurrah for helping with joint pain!!
3
I can relate to her struggle. I have had similar symptoms for years which have worsened significantly in the past three months. I suspected sjogrens and my dentist also suggested I be tested for it due to the changes in my gums and teeth during that time and yet when I went to my doctor I was told my symptoms aren’t severe enough to warrant any testing and to keep doing what I’m doing (eyes drops, lozenges etc.) As I am part of a large HMO, I don’t have the option of finding another doctor. I’m so sick of insurance companies.
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@Marcella
I would fight your doctor's opinion (and that's what it is - an opinion) that your symptoms are not "severe enough" to warrant testing. Sjogren's is a serious disease that can result in lymphoma! You NEED to be tested and, if positive for Sjogren's, you NEED to be followed by a rheumatologist. Go for it!
40
Dr. Criswell's complaint, that specialists don't think past their own area, is common with less rare conditions as well.
The second part of her complaint, that patients don't think to mention all their symptoms, is easier to fix. Open your mouth. A lot. Don't wait to be asked. It makes a difference , but only if you have a good clinician in front of you.
And if you identify as female, know that you may have to work even harder to get a doctor to really listen. Don't give up. And don't think you are being a "B" or a pain. Even if you are. This is too important to care about being seen as a "nice patient".
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@Cathy
A friend who is dealing with a baffling attack of something unknown which seemed be triggered by a long course of antibiotics was talking to me earlier. She had started keeping a little diary of symptoms, after realizing that she had seen one Dr and failed to mention a symptom that SHE had ASSUMED wasn't related to the other symptoms. - so she didn't 'bother' the Dr. with it Only later did it occur to her that everything might be related and she wouldn't remember very accurately later on. It's part of treating yourself seriously, I think, which is part of speaking up.
10
Some female patients may not mention all their symptoms because for many doctors this confirms a diagnosis of “stress and anxiety” and “conversion disorder”. Try it and see.
15
@Cathy Terrific post. "Even if you are." Thank you for the best encouragement.
3
As a rheumatologist I can say that this is a very nice review of the disease. There was one factual error. The dose of hydroxychloroquine is never three times per day. That is too high and can lead to toxicity of the retina over time. We generally prescribe a maximum of two tablets per day or less.
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@the commonwealth Thank you, doctor! Lupus patient here. Recent guidelines have even suggested a reduction from the two tablets a day, e.g., at 110 lbs. it may be a little too much for me to have the 400 mg prescribed by older standards. It is also helpful that you noted the potential retina complications; this risk increases with length of use (some say >5yrs to 7 yrs) and requires yearly specific retinal scans to check for damage. Finally, thank you for choosing one of the toughest specialties out there. You are truly needed!
29
@stargazer
After taking Plaquenil 2x/day for about 2 years for SS, and feeling lousy, I did some research and found that Plaquenil should be dosed based on bodyweight and that most people are taking too much, which can be toxic! I have cut down to alternating 1x/day with 2/day and am feeling much better overall. A 100 lb person should not be taking the same dose as a 150 lb person!
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@bklynlady Thank you for your comment. It is important to monitor this stuff, because most of us on hydroxychloroquine are on it for life! Best to you.
3