Questions about Sjogren's Syndrome
March 23, 2009 12:19 PM Subscribe
Sjogren's Syndrome: Do you have this or know someone who does? Do you mind sharing your experience with me?
I was recently diagnosed with Sjogren's Syndrome and I am trying to get an idea of what the future holds for me. I have looked at online support groups, but they make the situation seem so dire, and I know it's because the people who are doing well don't tend to hang out there. I thought that perhaps I might get a more realistic perspective by asking here.
What has been the course of the disease for you? How has it impacted your life? Is it possible to have this and not be miserable for the rest of my days? I am having a lot of anxiety over this--my symptoms are changing from day to day and I just . . . I don't know. I'm afraid.
Throwaway e-mail at worriedaboutsjogrens at gmail dot com.
Thank you.
I was recently diagnosed with Sjogren's Syndrome and I am trying to get an idea of what the future holds for me. I have looked at online support groups, but they make the situation seem so dire, and I know it's because the people who are doing well don't tend to hang out there. I thought that perhaps I might get a more realistic perspective by asking here.
What has been the course of the disease for you? How has it impacted your life? Is it possible to have this and not be miserable for the rest of my days? I am having a lot of anxiety over this--my symptoms are changing from day to day and I just . . . I don't know. I'm afraid.
Throwaway e-mail at worriedaboutsjogrens at gmail dot com.
Thank you.
I don't have Sjogren's. I do have RA. My mother had Sjogren's and so does a friend of mine. In my experience, I went from being to ridiculously healthy to "diseased" overnight. You will deal. It's not as grim as it seems - and you will find an amazing number of people out there have autoimmune diseases like Sjogren's, Crohn's, RA, PA.
The diagnosis is the first hurdle. Just dealing with the fact that not all is right with you and never will be again is mind-blowing. Getting the right treatment is the second step. That includes dealing with insurance companies that definitely don't have your best interests at heart. After that, with any luck, you'll plateau, and you'll coast for a good, long time. That is how it has worked for almost everyone I know who has an auto-immune disease.
You will never forget that you have chronic health issues, but after a while, they no longer consume your life.
posted by clarkstonian at 12:43 PM on March 23, 2009
The diagnosis is the first hurdle. Just dealing with the fact that not all is right with you and never will be again is mind-blowing. Getting the right treatment is the second step. That includes dealing with insurance companies that definitely don't have your best interests at heart. After that, with any luck, you'll plateau, and you'll coast for a good, long time. That is how it has worked for almost everyone I know who has an auto-immune disease.
You will never forget that you have chronic health issues, but after a while, they no longer consume your life.
posted by clarkstonian at 12:43 PM on March 23, 2009
I have secondary Sjogren's syndrome in association with SLE.
The problems I notice the most with my case is bad breath and sexual dryness issues, but breath mints/brushing more often and lube fix those pretty well. I always carry water with me for dry mouth and hand cream for my fingers and knuckles (they'll will crack if I'm not careful). I also slather on moisturizer every morning and night because my skin gets really dry and flaky. I've had the best luck with Aveeno, more so than the really expensive stuff. Some people recommend Biotene products for dry mouth. I used them during certain treatments that dried my mouth out, but I don't now. I know people in my SLE support group who have problems with their tear ducts. Most have gained relief from plugs.
I'm sorry that you have to go through this and feel this way. It is rotten having these diseases that nobody seems to understand and some don't believe exist. It is livable and relatively easy to treat. You'll learn what works and what doesn't. It gets easier from here.
posted by MaritaCov at 12:54 PM on March 23, 2009
The problems I notice the most with my case is bad breath and sexual dryness issues, but breath mints/brushing more often and lube fix those pretty well. I always carry water with me for dry mouth and hand cream for my fingers and knuckles (they'll will crack if I'm not careful). I also slather on moisturizer every morning and night because my skin gets really dry and flaky. I've had the best luck with Aveeno, more so than the really expensive stuff. Some people recommend Biotene products for dry mouth. I used them during certain treatments that dried my mouth out, but I don't now. I know people in my SLE support group who have problems with their tear ducts. Most have gained relief from plugs.
I'm sorry that you have to go through this and feel this way. It is rotten having these diseases that nobody seems to understand and some don't believe exist. It is livable and relatively easy to treat. You'll learn what works and what doesn't. It gets easier from here.
posted by MaritaCov at 12:54 PM on March 23, 2009
My mother has Sjogren's, and rheumatoid arthritis, as well. She had issues with dry mouth, dry skin, and so forth, but appears to have adjusted quite well. At least, I surmise she's adjusted well, because her favorite thing to expound (at great length and with high drama) about every minor annoying thing that happens to her. When something serious happens, she gets even more melodramatic.
Since we only hear about the Sjogren's when she wants to remind us that she has it, her case can't be that bad. She exacerbates her dry skin problems by not using moisturizer, and using hand sanitizer on anything, and her dry mouth have almost certainly contributed to her abnormally high number of dental cavities. However, she's mostly fine.
posted by Coatlicue at 1:10 PM on March 23, 2009
Since we only hear about the Sjogren's when she wants to remind us that she has it, her case can't be that bad. She exacerbates her dry skin problems by not using moisturizer, and using hand sanitizer on anything, and her dry mouth have almost certainly contributed to her abnormally high number of dental cavities. However, she's mostly fine.
posted by Coatlicue at 1:10 PM on March 23, 2009
My mom has secondary Sjogren's in conjunction with lupus and generally she seems pretty healthy. Like MaritaCov, she always has a bottle of water handy and she chews gum/sucks on mints a lot. Her lips get quite dry, but she copes by liberally applying Kiehl's balm. When she's having a bad flare up, she will use the fake saliva rinses (sorry, I don't know the technical term) but mostly she doesn't like them and uses them only when necessary. She also has some special prescription eye drops, again mostly for flare ups. Perhaps the worst of the ordeal has been some severe dental problems; she has had root canals on nearly every tooth, and her teeth break because they are brittle. I certainly don't know if this is the case for all people with the syndrome, or if it's because my mother's case went undiagnosed for some time. While I know her teeth are sometimes frustrating, painful, or embarrassing because they are no longer perfect, I don't think SS has otherwise had a major impact on her life. In fact, there are times (months on end, even) when she's apparently symptom free. She rarely talks about it with me and lots of people she knows don't even realize she's got an autoimmune condition. Lots of luck to you. I hope you'll find coping mechanisms and products that will make the condition easy to live with.
posted by katie at 1:22 PM on March 23, 2009
posted by katie at 1:22 PM on March 23, 2009
Two of my aunts have Sjogren's, but they are both in such poor overall health (and don't really take any steps towards improving their situations) that I can't say exactly how much it impacts their lives. However I will say I hear them complain (often!) about their various medical conditions I rarely hear about any of the Sjogren's symptoms. I notice my one aunt tends to drink more water and uses hand moisturizer more frequently, but that's about it.
posted by trinkatot at 3:13 PM on March 23, 2009
posted by trinkatot at 3:13 PM on March 23, 2009
My mother had Sjogren's, diagnosed when she was still in her thirties, and I have RA, diagnosed at 35.
Her Sjogren's was difficult for her, but a lot of that had to do with the lack of treatments available (mid 70's), and I think they screwed things up in the beginning. She lost her teeth. She also had surgery on her eyes to plug her ducts. But as long as she carried her water around, she was mostly good. She once got in trouble with the Metro cops in DC for bringing water on the train. And she would sit through the end of Catholic Mass with the Eucharist stuck to her cheek until she could go to the water fountain . She was also part of a study at Mass General, so I like to think that advances in treatment have been helped by her. But..... she died fairly young, at 58, and it was a mess of things that probably came back to Sjorgrens. She had liver problems and was being checked for non-hodkins Lymphoma when she died following a spleen removal.
So, you can imagine that I was pretty freaked out to get an Autoimmune diagnosis a few years later. And the good news for me will hopefully be good news for you. My Rheumatologist has me on Rituximab to treat the RA, and he also uses it to treat patients who have Sjogren's and he says it works great for them. Part of the reason I'm on it is because of the history of Sjogren's in my family (an aunt got it later in life too). If you have problems that go beyond what eye drops and water and lube can help you with, they are making huge strides in biologic medicines for treating Autoimmune and Rituximab could be a big help for you.
If you aren't seeing a Rheumatology specialist yet, I think you should check into that. Especially since Sjogren's often comes with other diseases.
posted by saffry at 3:40 PM on March 23, 2009
Her Sjogren's was difficult for her, but a lot of that had to do with the lack of treatments available (mid 70's), and I think they screwed things up in the beginning. She lost her teeth. She also had surgery on her eyes to plug her ducts. But as long as she carried her water around, she was mostly good. She once got in trouble with the Metro cops in DC for bringing water on the train. And she would sit through the end of Catholic Mass with the Eucharist stuck to her cheek until she could go to the water fountain . She was also part of a study at Mass General, so I like to think that advances in treatment have been helped by her. But..... she died fairly young, at 58, and it was a mess of things that probably came back to Sjorgrens. She had liver problems and was being checked for non-hodkins Lymphoma when she died following a spleen removal.
So, you can imagine that I was pretty freaked out to get an Autoimmune diagnosis a few years later. And the good news for me will hopefully be good news for you. My Rheumatologist has me on Rituximab to treat the RA, and he also uses it to treat patients who have Sjogren's and he says it works great for them. Part of the reason I'm on it is because of the history of Sjogren's in my family (an aunt got it later in life too). If you have problems that go beyond what eye drops and water and lube can help you with, they are making huge strides in biologic medicines for treating Autoimmune and Rituximab could be a big help for you.
If you aren't seeing a Rheumatology specialist yet, I think you should check into that. Especially since Sjogren's often comes with other diseases.
posted by saffry at 3:40 PM on March 23, 2009
My grandmother had Sjogren's and she frequently got cotton mouth and had to use oral lubricant to help her speak clearly. Food tended to get stuck in her esophagus from the dryness, so she had semiannual esophageal procedures in her later years to increase its diameter and make choking less of a concern. Sometimes she had to have solid foods blended with milk or water to help her get it down. She also used eye drops nearly every hour for lubrication and her eyes caused her a great deal of discomfort. Her arthritis got quite bad when was in her late 70s, probably as a result of her Sjogren's, according to her doctor. She was also the happiest, most wonderful woman I have ever known.
Good luck to you.
posted by HotPatatta at 7:12 PM on March 23, 2009
Good luck to you.
posted by HotPatatta at 7:12 PM on March 23, 2009
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How things evolve usually depends on whether your condition is isolated or is a part of an evolving wider autoimmune story (Sjogren like symptoms can be found in patients of SLE and MCTD etc.). Symptomatic treatment with artificial tears and sipping of water regularly works and most patients are able to make lifestyle changes to accomodate symptoms. If that doesnt work you may be given steroid or other treatment.
Another thing, were you diagnosed on the basis of symptoms alone or did they do a biopsy? I only ask that former may lead to mis diagnosis.
I hope this helps.
posted by london302 at 12:42 PM on March 23, 2009