Next step getting tested for sjogrens

[farmgirl]

Hi Gabriel: I am new to this forum and so am a bit late with my response to your thread but fell compelled to comment. I DO suffer from Sjorgens confirmed with a biopsy. Yes the biopsy did leave me with a small numb spot on my lip but I would rather have that and know what I am dealing with than not have it and continue to wonder why I suffer so much with the dry eyes. Like you my mouth is dry at night but does not bother me much during the day so MaryVa61's advice is not entirely accurate. I have the 'good' kind of Sjogrens, if there is such a thing, in that I do not have any symptoms of joint problems and all of my tests with a rheumatologist were normal. One eye specialist that I saw when I told her that I was going to get tested for Sjogren's snapped "You don't have Sjogren's, don't even go there, don't even think about it!" Not sure how she would know that with not tests but looks like she was mistaken. Needless to say I have not been back. Like potatocakes said it is easy to develop symptoms of a disease and for that reason I don't even go on the Sjogrens website because I know the disease can be very devastating and I too am afraid that I will develop 'symptoms' of a mental nature. The dry eye forum is sufficient for me as that is my major problem. My advice is if you want a definitive diagnosis but still do not have one get the biopsy, it is a yea or a nay and you will have your answer.

[littlemermaid]

Poppy, So pleased the ophth are more on the job. Maybe phone up the secretary or Patient Liaison sounding all innocent 'I had some blood tests on... and I haven't heard - what do I do to get the results?' A copy is v useful, otherwise admin just say 'blood tests are fine'. No, we want values, see if they're elevated/down etc. Oz sounds more like UK on random vaguery and overlooking things on test results. US has the 'work-up' culture. GP should have copy from hosp. If admin look confused I say confidently 'can I just have a screen-dump of that' (doh, OK). If you're not keen on phoning (me neither), maybe email. As long as you are super-pleasant and courteous, it's a normal reasonable query.

[poppy]

I recently had blood tests for sjogrens at my eye docs request, strangely, as they seemed to think I have a bad case of rosacea up until now, and my schirmers is normal. I guess that it's just because my dry eye is clinically so severe, they want to cover everything?

There were a couple of blood tests that are generic for testing for auto-immune disorders, and a couple of sjogrens specific blood tests. The guy taking the blood had never heard of the sjogrens specific tests and had no idea what they were. He had to call someone to find out. I guess they don't do those tests very often.

I don't know what my results are, but haven't been called so I presume they were negative. It's very frustrating how the patient doesn't get a copy of lab results here.

[Lacey1]

Yeap, my eyes healed and felt great at the one year mark. At the two year mark I had a foreign body sensation, which the doctor said was due to dry eyes. After using eye drops for a few days it went away and they felt great for another 9 months or so. Then I started getting little flare ups, but nothing too bad until about 8 months ago. I'm trying to pin down what's aggravating my eyes, so I'm starting with the autoimmune tests, then going to hormones, and I'll probably go to get allergy tests eventually. Money's tight right now, so one thing at a time. Too bad money wasn't more tight 4 years ago, then I wouldn't have been able to get the procedure.:-P

If it is sjogrens, I have talked to a couple of women who have and it seems symptoms and severity vary. There are always extremes, so inform yourself, but don't freak yourself out. I got very depressed when one of the dry eye doctors I talked to mentioned testing for sjogrens. After talking to a few women who still work and live life with Sjogrens, I determined it's not the end of the world and new treatments are and will be developed. So don't give up hope :-). Take care.

[Gabriel]

Thanks Lacey, I hope everything goes well for you and you can find relief. So your eyes healed up and got worse after two years? I've heard of this happening to some people. I hope there's something around the corner to help better with dry eyes. It seems like the research department could pump up the volume a bit more. I wish they could speed things up a bit.

[Lacey1]

Hi Gabriel, I'm going through the same thing right now. I had Lasiks, :-(, but dry eyes didn't start to develop until a couple years after. I'm waiting for lab test results. I have an appointment a week from tomorrow and I'm praying my results are negative. I was impressed with my rheumatologist. I mentioned dry eyes and he ordered tests for of course sjogrens, but also thyroid and a bunch of other stuff. He also urged me to go to my gyno. to get checked out for women's issues that may be contributing. If nothing else the tests will put you at ease. Wising you luck. Keep us updated :-).

[Gabriel]

Mary, thanks for such great information. I have read it can take years to get a diagnosis. I know I'm not the only one but I just hope I can find out an underlying cause to my symptoms. I will try and make an appointment with my local rheumatologist.

[MaryVa61]

I was repeatedy assessed for Sjogren's over the years and learned a good bit about it. You've recieved great info already so I'll just add a couple of things. It can take years to diagnose, and some people with it never have positive blood tests, though re-tested every few years. But there are risks associated with the biopsy, such as nerve damage, so it's not done unless all other obvious causes are ruled out.

It can be so hard to diagnose that there are special Sjogren's Syndrome Centers that exist, like at Johns Hopkins, for those that seem to have it but test negative with their local docs. Secondary Sjogren's, caused by other disorders, is more common than the autoimmune Primary Sjogren's. But both types are common, just not easily diagnosed. If your mouth isn't incredibly dry, it's unlikely. Some say water isn't the best thing to drink for dry mouth since it has no taste and doesn't stimulate salivation. It's kind of like just putting saline drops into dry eyes rather than lubricating drops. Just washes away the natural lubrication that's there. It's one theory out there.

It's best to see a Rheumatologist for testing, and you probably should have a consult if you have dry eye, dry mouth and joint pain. There are many, many disorders that can cause those three symptoms. They'd run a battery of blood tests. The specific tests for Sjogrens are SSA and SSB, and the basic tests for autoimmune disease in general are ESR, CRP and ANA. You can look them up at labtestsonline if you'd like. They'll likely test for other common disorders too though, with the same blood draw.

After all my years of autoimmune tests, it's finally clear that I don't have an autoimmune disorder after all. I have a complicated, rare connective tissue disorder, but not that type, and I'm hypersensitive to certain chemicals and meds, including some rx and OTC eye drops. Turned out that as a side effect of my Glaucoma drops, my otherwise mild joint pain had become severe. Changing Glaucoma drops helped dramatically. There are many problems that can mimic an autoimmune disorder.

Good luck to you in finding answers and relief.

Mary

[Gabriel]

Thanks for the info potato cakes. I have down days to. My eyes are by far the worse symptom. Some days are more bearable than others and I try to keep my mind occupied when I can. Maria, I hope its not sjogrens either and will let everyone know if it is. I know this is a broken record on this site but I hate that people don't understand what its like to have severe dry eyes. I had never meet or heard of anyone with it before now. There's a coworker of mine who I run into every now and then who has known about my dry eyes sense lasik ask me if my eyes are any better every time I see him. Well, this last time I saw him we went through the same spill again and he said why don't you just stop using drops and get used to it. You can probably imagine how pissed I was after that. We wear safty glasses at work and mine are a goggle style and I still have to use drops often because it gets very drafty there. When he sees me putting drops in he'll make some comment like "dang,dropping again". He just don't know some days it takes all I got to make it through the day. Anyway, I'm just venting now. Sorry

[mgshutterbug]

Gabriel, I'm sorry you are dealing with the variety of symptoms. I surely hope that Sjogrens is not the reason. Keep us posted.
Maria

[PotatoCakes]

You need to see a rheumatologist to get tested. A GP may be able to run the tests but rheumatologists are experts in the field and that's really who you need to see.
You are correct, any of those things could be due to aging. SPMCC is right, MOST drugs list dry mouth as a side effect.

In addition, suggestion is a powerful thing and it is very easy, once you begin considering something (like Sjogren's or any other disease) to manifest the symptoms. My former specialist continually told me I had Sjogren's despite a negative blood test and NO other symptoms besides severe dry eye. Two rheumatologists told me it was highly unlikely I have Sjogren's (one thought there was no way). During a particular down moment, I went to my eye doctor and came home and overnight, developed symptoms. All logic told me that it was unlikely I had the disease and yet I had multiple and severe symptoms. I returned to one of the rheumatologists and she was amazing, making me feel comfortable and not doomed.

I think sometimes, when you have something severe and chronic, without a cause, it's almost desirable to have some disease because there's a REASON for what you're going through. At least I feel this way as I keep searching for a CAUSE.

It's possible you have Sjogren's so, IMO, a blood test is prudent (not necessarily a biopsy unless your rheumatologist thinks so) but, you may not. That's ok too. Not easy but ok. Slowly, I'm coming to grips with the fact that no one may be able to find a cause for my dry eyes right now, maybe ever. In the meantime, I focus on management of the symptoms and try to maintain a positive attitude, which is not always easy, depending on the day... If you're in the same position, hang in there. Some day, someone may find a cause for us and more importantly, a cure for us all.

[spmcc]

The only meds I take are doxy (not sure if its helping), restasis, Xanax (one at night to help sleep), and advil daily.

I found that all sleep aids list dry mouth as a side effect. This includes Rx and OTC (e.g., Tylenol PM, Advil PM, etc.)

[Gabriel]

Thanks for the replies. For starters, do I need to see a specialist to get tested? As far as the dry mouth goes, its only dry at night and when I wake. Other than that its more of a loss of quality than quantity. I feel like my body is lacking mucus more than water. I do get muscle and joint aches among other few symptoms. I just thought these were part of aging. The only meds I take are doxy (not sure if its helping), restasis, Xanax (one at night to help sleep), and advil daily. I do drink lots of water and decaf green tea. That's about all I drink. I'm a bit nervous about everything and hope my symptoms don't get worse. I just read about people suffering and not being able to work worries me. Its the thought of not being able to provide for my family in the future.

[PotatoCakes]

I'm not a huge fan of the Sjogren's Syndrom Foundation (as someone involved in non-profits, their financials bother me) but this is a good description of the tests and their outcomes (for instance, the blood test, only 70% with Sjogren's test positive) http://www.sjogrens.org/home/about-s...rome/diagnosis

Consider also, if you are on any medications that might contribute to dry mouth, etc. It's not uncommon for various drugs to mimic some of the symptoms of Sjogren's. Do you have any other autoimmune disorders? That might increase your chances.

[Ahmed]

Its not simple to test for, the basis of the diagnosis will come from your symptoms. There is a test which will see if you have anti alpha fodrin antibodies, this is a marker for the condition.

If I were you, the first thing I would do is try drinking more water and see if that helps.

regards,

Ahmed.