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Old 06-04-2010, 01:49 PM   #1
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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.

 
Old 06-06-2010, 03:47 PM   #2
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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.

Take care,

Angie

 
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Old 06-06-2010, 06:26 PM   #3
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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!

 
Old 06-07-2010, 08:32 AM   #4
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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 View Post
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!

 
Old 06-07-2010, 06:24 PM   #5
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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!

 
Old 06-07-2010, 08:49 PM   #6
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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 View Post
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!

 
Old 06-09-2010, 09:31 AM   #7
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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.

Wishing you the best in health!

 
Old 06-09-2010, 02:11 PM   #8
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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.

Just my opinion, no way to prove it, though.

 
Old 06-11-2010, 03:01 PM   #9
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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.

 
Old 06-16-2010, 05:42 AM   #10
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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!

 
Old 06-16-2010, 09:06 AM   #11
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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!

 
Old 06-17-2010, 01:22 PM   #12
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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.

 
Old 07-18-2010, 05:49 PM   #13
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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 View Post
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.

 
Old 07-30-2010, 07:51 AM   #14
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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.

 
Old 08-04-2010, 01:55 PM   #15
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Re: Opinions please - What do you think causes Sjogren's?

Quote:
Originally Posted by 92261 View Post
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.

Last edited by Mechelle1; 08-04-2010 at 01:56 PM.

 
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