Opinions please - What do you think causes Sjogren's?
I know the cause of Sjogren's Syndrome is unknown and apparently seems to either be hereditary or caused by a virus, which I "assume" means you get sick with a virus and your immune system, for whatever reason, goes overboard attacking the wrong things. That's how I interpret the potential virus cause.
I don't know of anyone in my family who has had this. I know it's hard to diagnose and easy for someone to have without knowing it, if symptoms are mild. My guess is, in my case, it could be caused by a virus. One reason I believe this is the last time I was sick, I was sick for three weeks. The first two weeks were bad and the third week I was still recovering, but not 100%. I don't seem to get sick often, but when I do it's not a simple cold, but something that seems to last at least a week. The three week virus was longer than usual and I haven't been sick since. This leads me to another question on how often people with Sjogren's Syndrome seem to get sick, which I'll start a new thread on.
Do you think your Sjogren's is hereditary, potentially from a virus, or something else? I know no one knows for sure, but I'm curious what people think.
Re: Opinions please - What do you think causes Sjogren's?
Hi Danigirl22,
I think it might be a combination of genetics and environmental factors. I hear all too often that when one person has an autoimmune disease they may also have one or more relatives that have an autoimmune disease. With all that we face with viruses, pollution, stress, and other environmental factors, I would not be surprised is such elements could set off an autoimmune reation in a person that has the genetic predisposition for an autoimmune disease.
There are so many theories out there, so we may never know. However, that doesn't mean that answers won't be uncovered some day. Hope this helps.
Re: Opinions please - What do you think causes Sjogren's?
Danigirl22: Dr. John Lee's book "What your doctor may not tell you about menopause" mentions this in it. He says the onset of autoimmune disorders is often at middle age, when estrogen dominance becomes common. He says Hashimoto's thyroiditis, Sjogrens, Graves' and Lupus are all not only more common in women, but appear to be related to estrogen supplemenation or estrogen dominance. He says women who start using natural progesterone to relieve menopausal symptoms report that their disease symptoms also gradually abated.
I think all of these things are related to our highly toxic world and the foods we eat are loaded with chemicals and it just increases the estrogen in us and our bodies can't fight back.
Women are having less children these days and therefore make more estrogen not being pregnant. The old timers knew better. They had 9 or more kids in their families. Having kids makes us healthier. Think about it!
Re: Opinions please - What do you think causes Sjogren's?
Thanks for the responses. I've read Sjogren's is most common in women who are 40 and older. I'm 33 and I know it can happen at any age, but since there's no evidence of this running in my family, it makes me wonder. I'm curious if there was a way I could have prevented this from happening. I took birth control pills for years and stopped after getting diagnosed because of high risk for blood clots. I drank echinacea tea last winter, which is an immune booster, so I won't be drinking that anymore. It can make symptoms worse, however I didn't notice an increase in symptoms last winter. I didn't know anything was wrong then. I also drank Airborne a lot in winter to prevent myself from getting sick, so I wonder if I did this to myself, over-boosting my immune system, and if I happen to have a gene that causes Sjogren's anyway, maybe I would have gotten it sooner or later. I just know how sick I was the last time I got sick and wonder if that contributed to this.
Thanks again for all input.
Quote:
Originally Posted by 92261
Danigirl22: Dr. John Lee's book "What your doctor may not tell you about menopause" mentions this in it. He says the onset of autoimmune disorders is often at middle age, when estrogen dominance becomes common. He says Hashimoto's thyroiditis, Sjogrens, Graves' and Lupus are all not only more common in women, but appear to be related to estrogen supplemenation or estrogen dominance. He says women who start using natural progesterone to relieve menopausal symptoms report that their disease symptoms also gradually abated.
I think all of these things are related to our highly toxic world and the foods we eat are loaded with chemicals and it just increases the estrogen in us and our bodies can't fight back.
Women are having less children these days and therefore make more estrogen not being pregnant. The old timers knew better. They had 9 or more kids in their families. Having kids makes us healthier. Think about it!
Re: Opinions please - What do you think causes Sjogren's?
Hi Danigirl22,
I'm 36 and was around your age when my health started getting worse. Since my early twenties I had Fibromyalgia but nothing more. Then in 2006 my health started going down hill. I have no idea why but I was under an extreme amount of stress related to work and think this just helped to kick of a condition that was already stirring in my body.
I don't know of anyone in my family that could have had Sjogrens, so like you, I'm at a loss to understand how it could all happen. I was actually told by a wise woman on the Lupus board not to take items to boost my immune system because it was already overactive. However, I take vitamin C, spirulina, and eat my fair share of fruits and vegetables. I think the only thing that has kept me healthy this winter has been avoiding prednisone, eating healthy, and drinking water. I also try to get out for walks. This was my first winter on Methotrexate so I was shocked that I didn't end up with pneumonia like I did last year. Go figure!
We may never know why this happend. Yet, it is with us now, like an unwanted companion, so we have to make the best of it and try to be good to ourselves. I hope that you continue to do well and can have more good days ahead!
Re: Opinions please - What do you think causes Sjogren's?
Hi Angie10,
Thanks! As far as vitamin C, I've been wondering if it's good or bad to have or even drink as in orange juice! There are so many doctors involved in treating this. I'm planning on seeing a nutritionist for advice, as my rheumatologist recommended. Thankfully insurance covers it since it's related to a medical problem. The nutritionist specializes in autoimmune diseases. I'm worried about getting sick, wondering if it could throw my immune system even more out of whack. I want to be healthy, but can't boost my immune system so it's a bit confusing.
I hope you have many good days ahead too.
Quote:
Originally Posted by Angie10
Hi Danigirl22,
I'm 36 and was around your age when my health started getting worse. Since my early twenties I had Fibromyalgia but nothing more. Then in 2006 my health started going down hill. I have no idea why but I was under an extreme amount of stress related to work and think this just helped to kick of a condition that was already stirring in my body.
I don't know of anyone in my family that could have had Sjogrens, so like you, I'm at a loss to understand how it could all happen. I was actually told by a wise woman on the Lupus board not to take items to boost my immune system because it was already overactive. However, I take vitamin C, spirulina, and eat my fair share of fruits and vegetables. I think the only thing that has kept me healthy this winter has been avoiding prednisone, eating healthy, and drinking water. I also try to get out for walks. This was my first winter on Methotrexate so I was shocked that I didn't end up with pneumonia like I did last year. Go figure!
We may never know why this happend. Yet, it is with us now, like an unwanted companion, so we have to make the best of it and try to be good to ourselves. I hope that you continue to do well and can have more good days ahead!
Re: Opinions please - What do you think causes Sjogren's?
Danigirl22,
I share your frustration. My problems began with Hashimoto's Thyroiditis in my early twenties, followed by a diagnosis of Sjogren's a few years later (after considering a diagnosis of Lupus) and finally, three years ago a diagnosis of fibromyalgia. I have tried every drug treatment and almost every alternative therapy out there. I have not consulted a nutritionist, though and I would be really interested to hear what tips you receive on your visit.
Re: Opinions please - What do you think causes Sjogren's?
My personal belief is that it is caused by a virus. I suspect genetics could also play a role, but there is no proof of that in my three generations of kin.
I think it may be analogous to a herpes virus; one that may lay dormant for years and then be triggered by a health event.
The health event, in my case, was allergy shots.
I was just fine until I begin 3-1/2 years of allergy shots. About 1-1/2 to 2 years into the shots, I started to feel poorly. Achy, dry flaky skin, dry eyes and mouth.
Referred to a rheumy, tests taken and Dx was PsA + Sjogren’s.
Just a coincidence? Maybe. But I could feel my whole body reacting to those shots. My arms where they injected would almost glow they were so hot for 2-3 days after the shots.
I really think it turbo-charged my immune system and it just triggered the PsA and Sjogren’s virus which had been hibernating for years.
Re: Opinions please - What do you think causes Sjogren's?
Danaberrie, what has been the best treatment for you? I haven't scheduled an appointment with a nutritionist yet, but plan to soon. I'll share what I find out.
Re: Opinions please - What do you think causes Sjogren's?
Danigirl,
It's difficult for me to tell what is treating what at this point, but I have been on Plaquenil for several years, and can tell you that the one time I went off for a little bit, the body aches were much worse. I think others would agree that with Sjogren's we are often left to treating the symptoms only - what symptoms are you having? I use drops for my eyes several times a day, but do not seem to have a dry mouth problem.
For me there is a hereditary component because my grandmother has sjogren's and psoriasis - my sister has sjogren's, psoriatic arthritis. I probably would have started to feel symptoms at some point in my life, but can also trace the beginnings to a very bad virus with a high fever that lasted at least a week.
Overall, I have felt my best when I am eating well, sleeping regularly and not overtaxing my body. This little journey has definitely taught me to listen to what my body is telling me. Sometimes that means the floors won't get scrubbed or the laundry will have to wait another day, but I've learned to accept that and definitely relax a lot more than I ever used to! Because the aches and pains and fatigue are the worst for me - symptoms which of course overlap with my fibro - I am on several other medications and am always trying new alternatives. I am currently looking into accupuncture. If you or anyone else has any feedback on that, I'd appreciate it!
Re: Opinions please - What do you think causes Sjogren's?
My symptoms are dry eyes (Sometimes I wake up and one or both of my eyes are almost stuck shut. I started Restasis twice/day, eye drops throughout the day and ointment in my eyes at night. It helps, but there's still dryness. I'm working on trying to find contact lenses I can wear for short periods of time so I can exercise more comfortably and for special occasions, but I won't be able to wear them full time again.), dry mouth (trouble swallowing food, vitamins... trouble talking for significant amounts of time, such as in work meetings, without having water or cough drops on hand. The dryness drives me crazy. I recently started Evoxac.), fatigue, brain fog... On rare occasions I've felt arthritis in my fingers, but generally no pain. These sound like petty complaints, so I hate to complain, but dealing with it daily, as you know, is no fun.
From everyone's comments it does sound like it is hereditary to some degree and a virus or certain event triggers it. Of course no one knows for sure. It's interesting to hear everyone's stories.
I'm sorry you have Fibromyalgia too. My mother has it.
I considered acupuncture (for migraines), but never got to that point since medication finally helped big time. I've heard great things, but haven't tried it myself. It's worth a try! Maybe yoga could help with relaxation, reducing stress. I haven't done that either, but am considering it. Good luck!
Re: Opinions please - What do you think causes Sjogren's?
In my case, my Sjogren's was caused by my getting a very bad case of Viral Menningitis, which I was fortunate to have lived through. The doctors all said that the menningitis definitely triggered the SS. Most of the information I have read on Sjogren's Syndrome has stated that in the majority of the cases, a virus is what triggers SS, and that is also what my physicians say.
Re: Opinions please - What do you think causes Sjogren's?
Sjogren's Syndrome is hereditary. The genes can lie dormant for years and years and only show up when your autoimmune system has been compromised with, for example, a virus. When the autoimmune system becomes "hyperactive" as I call it, trying to fight the virus, then the Sjogren's becomes active. This is not my opinion, this is how the disease process has been explained to me by two leading rheumatologists.
Quote:
Originally Posted by Danigirl22
I know the cause of Sjogren's Syndrome is unknown and apparently seems to either be hereditary or caused by a virus, which I "assume" means you get sick with a virus and your immune system, for whatever reason, goes overboard attacking the wrong things. That's how I interpret the potential virus cause.
I don't know of anyone in my family who has had this. I know it's hard to diagnose and easy for someone to have without knowing it, if symptoms are mild. My guess is, in my case, it could be caused by a virus. One reason I believe this is the last time I was sick, I was sick for three weeks. The first two weeks were bad and the third week I was still recovering, but not 100%. I don't seem to get sick often, but when I do it's not a simple cold, but something that seems to last at least a week. The three week virus was longer than usual and I haven't been sick since. This leads me to another question on how often people with Sjogren's Syndrome seem to get sick, which I'll start a new thread on.
Do you think your Sjogren's is hereditary, potentially from a virus, or something else? I know no one knows for sure, but I'm curious what people think.
Re: Opinions please - What do you think causes Sjogren's?
Hi Danigirl22
Thank you for raising this.
I think it might be triggered by a virus and environment.
I had measles when I was 5 and remember as a child having a dislike of strong sunshine, having itchy skin and awful headaches.
Later in life, I found it difficult to conceive, (low hormone levels) and when I did finally become pregnant nearly miscarried. I had my first flare up days after giving birth.
I also think the environment plays a part. My parents lived in rural Ireland all their lives and moved to an industrial U.K. city shortly before I was born and I have lived there ever since. It did not help that one of my parents smoked, so passive smoke may be a factor. No other relative has any AI disease.
Re: Opinions please - What do you think causes Sjogren's?
Quote:
Originally Posted by 92261
Danigirl22: Dr. John Lee's book "What your doctor may not tell you about menopause" mentions this in it. He says the onset of autoimmune disorders is often at middle age, when estrogen dominance becomes common. He says Hashimoto's thyroiditis, Sjogrens, Graves' and Lupus are all not only more common in women, but appear to be related to estrogen supplemenation or estrogen dominance. He says women who start using natural progesterone to relieve menopausal symptoms report that their disease symptoms also gradually abated.
I think all of these things are related to our highly toxic world and the foods we eat are loaded with chemicals and it just increases the estrogen in us and our bodies can't fight back.
Women are having less children these days and therefore make more estrogen not being pregnant. The old timers knew better. They had 9 or more kids in their families. Having kids makes us healthier. Think about it!
Funny that you should mention having kids as a "Solution". Alot of my auto immune problems started AFTER the birth of my son, including my diagnosis of Sjogren's!! I admit I have a cluster of AI disorders and a couple were on going BEFORE pregnancy (psoriasis and migraines (yes, my neuro says there are some who think there is an AI component!)) but the Sjogrens, polyarthritis and thyroid disorder all came AFTER pregnancy. So THAT was my trigger, I believe, because NO one in my family has Sjogren's or polyarthritis. Although we have a plethora of thyroid disease, migraines and psoriasis so the GENETIC part for AI disease is covered in spades. My Rheumy says that once you have ONE AI, you are set up for others.
Re: Opinions please - What do you think causes Sjogren's?
I'm 57, my symptoms first started to appear while I was recovering from pneumonia and Typhoid Fever in 2006. I blame the Typhoid Fever as the cause of my Sjogren's, but who knows. It took me about 2 years to get well from the pneumonia and typhoid, however, I never really fully recovered and have never regained my full strength. And now I have to deal with Sjogren's.
One year ago I was finally diagnosed with sleep apnea, which I suspect I've had for at least 20 years. My sleep test showed that I stopped breathing 40 times per hour. No wonder I always woke up feeling worse than when I'd gone to bed the night before. Now I use a cpap machine at night and whenever I take naps. As a result I feel a lot better and have gotten a lot of stamina back. If anyone out there is not sleeping good at night, maybe you're not sleeping at all, like I was. Ask your doctor for a sleep test. More people have this than realize it. My son is now on cpap treatment and so is my husband and my nephew. BTW, my doctor was surprised because he said I did not fit the "normal" profile of someone with sleep apnea because I am not overweight and I'm female. Doctors are prone to think it only occurs in overweight men, but they are wrong wrong wrong.
Re: Opinions please - What do you think causes Sjogren's?
In [1], the etiology of SS is attributed largely to Coxsackie virus. Interestingly, these scientists have reported the finding of Coxsackie B protein in all minor salivary gland biopsies.
Given that some patients have never contracted with the said virus - or are unaware of so - , it would be of interest for a scientist to check for homology (common areas) between Coxsackie, meningitis virus and typhoid fever bacterium, as reported in posts in this very thread. Otherwise put, all observations made by looking at patients histories could be gathered in contraction with certain microorganisms which share a certain (immunogenic) area.
Chattie617, r u aware of the virus which caused the meningitis?
Also, in my endeavour to find the best -at least symptomatic- treatment for dry eyes, I came across the application of autologous serum drops (from one' s own blood). I have gathered extensive literature, protocols and have spoken with patients who actually did it and may I say it is the best thing so far -not curing, yet, largely, improving. In fact I am on the endeavour to apply it. - all the rest, such as cyclosporin, Plaquenil, etc are dissapointing and I personally am unaware of anyone who has seen improvement in terms of eye dryness.
[1][ Stathopoulou, E. A., Routsias, J. G., Stea, E. A., Moutsopoulos, H. M. and Tzioufas, A. G. (2005), Cross-reaction between antibodies to the major epitope of Ro60 kD autoantigen and a homologous peptide of Coxsackie virus 2B protein. Clinical & Experimental Immunology, 141: 148–154.
Re: Opinions please - What do you think causes Sjogren's?
Good Morning Baklavas,
Thank you very much for your information. I did not know anything about the Coxsackie B finding. I appreciate your posting of this along with the reference to the study.
I have never liked the cyclosporin drops. For me they did more harm than good.
Re: Opinions please - What do you think causes Sjogren's?
My sickness began just over two years ago. I have no stress in my life, no sickness, or anything else to precipitate this. It began with autoimmune thyroid disease. I had atibodies for both Graves and Hashimotos, but I have settled into more of a hypo stage.
When this began, it was like a light switch being flipped. I literally woke up one day and I was different. All of my doctors have always suspected some other autoimmune disease or something else was wrong in addition to my thyroid stuff.
I have been to an infectious disease doctor who covered all bases...even testing me for exotic things since I was once in the military and that I grew up on a farm in the midwest. Nothing infectious of any sort came back and it was concluded it is autoimmune.
From my studies, I believe that most people may be genetically weaker or predisposed to autoimmune conditions. I believe that toxins and /or environment may trigger it. I often wonder about living next to a major airport and how unhealty that must be for me. I have the Epstein-Barr virus runnng rampant through my body from being infected when I was a teen. When it was checked in the fall, norm. lab ranges were 0-36 and my number was 750.
I am new to Sjogrens. Mine recently began in the last several months. Presented itself with a dry mouth which is annoyed. I shrugged it off at first but then realized that maybe there was a problem when I am brushing my teeth up to 8+ times a day for many days just to get my mouth refreshed from lack of saliva. I have continued to have joint, body aches, low grade fevers, chills, etc since my thyroid autoimmune began. I recently began developing the mouth sores and now my entire upper left side row of teeth is very sensitive which makes drinking even room temp. water a pain. Quality of life is really going down with the sensitivity. I see a rheumatologist soon to begin exploring treatments.
Re: Opinions please - What do you think causes Sjogren's?
Quote:
Originally Posted by latacharita
I'm 57, my symptoms first started to appear while I was recovering from pneumonia and Typhoid Fever in 2006. I blame the Typhoid Fever as the cause of my Sjogren's, but who knows. It took me about 2 years to get well from the pneumonia and typhoid, however, I never really fully recovered and have never regained my full strength. And now I have to deal with Sjogren's.
One year ago I was finally diagnosed with sleep apnea, which I suspect I've had for at least 20 years. My sleep test showed that I stopped breathing 40 times per hour. No wonder I always woke up feeling worse than when I'd gone to bed the night before.
Hi latacharita,
I read your post with much interest. My story is I have MS and SS. I got diagnosed with MS approx. 12 years ago but know I've had it since my teens and was sent for all sorts of conceivable tests for years but to no avail. It wasn't till my legs started getting affected and optic neuritis that someone decided let's do an MRI etc.
Anyway, why I read you post with interest is that I too had typhoid which was nearly 8 years ago now. At first I was told I had Chronic Fatigue syndrome, then it went to possible Lupus on top of MS. My neuro that diagnosed me for the last 8 years said I was dealing with something more on top but would test neg to ANA (well had one positive) then they did antibody test for SS but was neg.
I started complaining over 2 years ago of waking up with copious amounts of blood, which I think GP thought I was overacting, she thought it wasn't so bad... then I ended up having issues of being unable to breathe properly and send for lung tests and came back clear for asthma. The last few years I have found it difficult with breathing in dry heat and winter, but humid heat I breathe just fine. In winter it was being dubbed as seasonal asthma even though lung tests said no.
Each year I've gotten worse. Last winter had 7 or 8 courses of antibiotics as I get chest infections really easily. Is anyone else the same??? I have flu vac but this year am having pnuemonia too as my GP is advising that given I have firm diagnosis of SS which was diagnosed by strip tests and rose bengal tests.
I am also in pain with my joints but have massive flare-ups out of the blue where for approx 3 weeks I cannot really move. Joints are so bad and also muscles and tendons. I get tendonitis regularly now. Does anyone else get this? I've also had chronic bouts of gastritis which landed me in hospital. I can't take any anti-histamine as the last time I did it was like I was breathing fire for hours upon end. So dry and hot...
My voice is also terribly affected. I have to use biotene mouthwash, toothpaste and gel, along with gels and eyedrops for the eyes. Just had punctual plugs put in the bottom tear ducts and go back to eye specialist next week to see if top also need to be done. My everyday eye moisture level was 3% and even with plugs, drops, gels, isn't improving a great deal. Still getting erosion of the eye. As mentioned before my throat bleeds during the night because of such severe dryness even though I lather it with gel. Does anyone else experience the same?
Also latacharita, I too had sleep study done and was told I wake up 23 times an hour. I should note same thing said to me that I don't fit profile of sleep apnea as not oveweight, don't smoke etc. I thought that my report was bad, but yours is so much worse. I have been told though that CPAP machine for me is not good because it will dry my throat further. How do you find it with yours?
I'm also curious to what level of fatigue you suffer as mine is so great that I got diagnosed as chronic fatigue. Can't do normal activities and I'm not 50 yet and my life has been like this for 8 years at this level of fatigue.
I also find that my MS and SS piggyback each other. If have a MS relapse or new attack, SS will get 1,000 times worse and this is when the crippling arthritis strikes and I can't move without being in tears. Have to have pillows under all my joints - it's just awful but only last max 3 weeks at this intensity then disapates.
I'd love to know what everyone uses to relieve throat. Also my nose ulcerates like buggery. Went and saw the GP today, as just getting over a bout of ulceration even though I use a nose gel to help keep lubricated, about white marks inside my cheek and funny skin lesions. Sh said she thinks the cheek maybe thrush and that the skin lesion are possible psorasis. I get psorasis in my hair at times and ear but this is the first to start on other areas. If my cheek is thrush, it'll be the second bout in a year. She's given me Dakarin to use and it absolutely burns my throat even though I'm not swallowing it as of such, just allowing it do stay in mouth as long as possible. It's also making me feel ill.
Now I have a BIG question to ask here too. Does anyone with SS on here suffer from Glossopharyngeal nueralgia?? I have this and been told it's a rare symptom of MS, but what I've noticed on the last 2 attacks is that my SS is really bad and that my glands in front on my ear inflame so much it's like a pea, and my mastoid bones hurt like buggery and my ears get affected all on the side the neuralgia strikes. So my thinking is maybe it's not linked to MS but rather SS. So would LOVE to hear from anyone who has this...
I also get with the SS terrible kidney pain, so off to see the kidney specialist shortly to be checked. I've also been booked to see a top oral specialist as well that is coming from another state to see me. I know I've been classed as chronic condition with the SS.
Another maybe odd question, but do any of you have lots of bony growths protruding from your gums??? Mine started approx. 6 years ago and have gone nuts in every part of my gums, including the roof of my mouth. Have extoses under tongue extensively, upper and lower gums both back and front. Have been under oralmaxillia specialists for a number of years monitoring the rapid growth of these things. It's this specialist on my lst check-up (usually go 6 monthly) that organised this other specialist when I told them of my recent diagnosis with SS. So just wondering whether anyone else with SS has noticed they have this issue too?
Sorry that this post is so long but so many questions. I feel so alone as I've been told most people with SS just experience dry eyes and mouth, but I've got the whole kit kaboodle. I'm glad to finally have a name to it as being told no that's not part of your MS when I'd complain about things, and told there's something else but no-one being able to tell me what was very frustrating. More frustrating than waiting many years for the MS diagnosis.
OH I have lost so much hair too. During flare-ups it just continually falls out. Is anyone else the same?
