Hi! I'm new :)

[Just_G]

  Hello!

So, I started my journey about 4 years ago at age 30.  My skin was so dry it flaked, I itched, I ached.  After several rounds of steroids didn't kick it, my PCP referred me to a Dermatologist who at first thought I had Dermatomyositis.  She later backed off the diagnosis, but shouldn't have.  I went 4 years from doctor to doctor.  I heard that I was "Remarkable!  Skin as dry as a bone!" but allergic to ALL lotions.  A Rhemy gave up, saying "I've scratched my head a thousand times over this and can't figure it out.  Sorry."  another Dermatologist just simply gave up.  This past May I finally went to a very well respected Medical University in town... at first sight the Rhemy knew I had Dermatomyositis, the Dermatologist confirmed it.  Finally I had some answers.

I started Plaquenil.  I needed an eye exam, of course.  Part of the exam was the paper test to measure my tears.  Zero.  I had zero tears!!!  I didn't realize my eyes were dry.  The doctor was amazed, she thought that I must be using eye drops.  I had never used them.  Of course, now she wants me to use them throughout the day.  After doing this for 2 months I went back and repeated the test--still no tears.

My question is, with the AI disease, I'm guessing that I ought to question if I also have Sjogrens, correct?
Thank you!
-G

For the record the medications I am on are:
Steroids, 30mg/daily
Plaquenil
CellCept
Effexor

[Patze]

Hi Just_G,

Let me welcome you to the SJS World family!  Please look around as there are tons of topics that you might find intersting; (ssshhhhh!) let's not even mention the oodles of terrific members!

I don't know if you have SJS or another AI or a combo of things.  What blood work have your doctors done?  What were the results?

I have dry skin, but nothing like yours so hang in there and hopefully they can find a lotion that might help you soon.

Hang in there and take care of yourself -

Patze

[lynnmarie219]

Hi G and Welcome to Sjogrens World!

So glad that you found us and hope that you find the information on this site useful...you will also find a lot of support and friendship when you visit here....this is one great place with many kind and caring people from all over the world who visit on a regular basis.

Take your time to read through the old posts and ask any questions that you may have!


Welcome!

[Linda196]

Hello G, welcome to Sjogren's World.

I guess, for the record, you probably should ask about a DX for SjS, which in your case would be classified as secondary SjS. You're treatment regime probably won't change, unless your opthomalogist can add Restasis drops, which, rather than just lubricating the eye actually treat the underlying inflammation in the lachrymal (tear producing) glands.

Testing for the specific autoantibodies for Sjogren's (anti SSA and SSB) might also indicate if the dryness might be a side effect of the Effexor, but even if the tests weren't positive, that doesn't completely rule out SjS, because many people have been diagnosed seronegative (without positive bloods)

[eyeamdry]

A zero "Schirmer's" test for tears would not, by itself, mean a Sjogrens diagnosis.  It could indicate this might be the case, but it could also mean there are just dry eyes from some/any source.  Other factors would neet to be taken into consideration.  Lucy

[nursenoor]

Hi Just G,

  Welcome to the community. Yes you should definitely question that. When you got your eyes checked they did not mention sjogren's? Crazy enough my eye doctor did not either and they where treating me for dry eye and terrible inflammation pain. Seems like that would be one of the first things they'd think of. They were like, "The are a lot of things that cause dry eye..." The tear production test that you had is actually one of the diagnostic criteria for sjogren's! Anyway something I also learned at a conference that I went to is that these autoimmune diseases are all linked. So if you have one you can easily have another. For example sjogren's and lupus. The only way I found out is that I happened to go for a physical a month or two after and complained of joints aches. The doctor checked for rheumatoid arthritis and different antibodies and anti SSB (one of the sjogren's antibodies) came back positive along with a positive for  anti neuclear antibodies (ANA).  She said, "this might not be anything, but have you had dry eyes or dry mouth?". Hello! So yes definitely look into it I have a skin rash now that steriods are not knocking out like they used too. It might be allergy related to I went and got skin testing done. Would you believe I am most allergic to butternut squash, carrots, soy, and string beans? lol

  Wish you the best, Nur

[DragonflyC]

I just want to second everything that Linda said. 

I, too, have dry eyes without always being aware of it.  They'll get crazy red and be uncomfortable, but the feeling doesn't always translate to something I recognize as dryness.  Regular eye drops can help, but they won't change your tear production.  Only Restasis can do that (maybe--it doesn't work for everyone). 

You should definitely get blood tests for SJS.  They don't always tell the whole story, but they might.  When my SJS kicked in, my ANA was 1:640 and I tested positive for SS-A.  It can be a difficult disease to diagnose, though sometimes (like in my case) it's pretty easy.

Have you had any relief from the plaquenil yet?  It can take a while to kick in, but a lot of people find it quite helpful with SJS.  As far as meds go, if you do have SJS, you might end up adding on Restasis, either Evoxac or Salagen (meds that increase saliva production), and maybe prednisone (I take a small dose for two weeks or so when I flare).  Other than that, it's eye drops, avoiding stress, eating right, sleeping, etc.  Mostly we try to manage our symptoms. 

[Pisces24]

Welcome to the group. I was finally diagnosed with Sjogrens in March 2009. I think most of the folks will tell you here that they had a looong journey to diagnosis.
My journey started when my gp told me about my "wonky" bloodwork and sent me to a specialist in 2003. I should say specialists because I had a 2 yr saga of different doctors driving me nuts. I had one tell me he was sure it was some type of cancer but durn I wasn't showing the bad symptoms I should be and durn I wasn't sick enough. Excuuuuuuse me.    In 2005 was given a diagnosis of indolent lymphoma. Cancer that is progressing very slowly. In 2008, turned  over to an immunologist.   He ran the SJS test just due to my bad teeth cavity problem and partroid glad swelling in the past. Well Jackpot. I tested very high for both A&B. I went to see a Rheum dr who is monitoring me and told me it was the SJS all along - not lymphoma or allergies.    I would tell anyone getting the Duh scratching their heads drs to go to a teaching hospital. That is where I got my diagnosis and that is where all my doctors are at except my gp They don't shrink away from puzzles and I always get 2 drs for the price of one. LOL   I've been told that autoimmune diseases are very hard to diagnosis - I say depends on the dr.

Yes get the blood test for SJS. I got a pneuomonia shot and 1 month later they ran a test to find out how I made antibodies. Most peope make 14 from that test but I made only 2. An under active thyroid can cause dry skin and hair too by the way. As to the eyes, your eyes might not be dry all the time. I get what I called allergy eyes every so often and that is when I rate a 1 on them. Otherwise they don't bug me.
With Sjobrens they tell me it is a lot of symptoms that fit together and make up the SJS puzzle.

[Scottietottie]

Hi G 

Welcome to Sjogren's world from me too! 

Take care - Scottie 

[Just_G]

Thanks All

Yes, I've had a ton of blood work.  I will have to ask if they spefically tested for Sjogrens.  No one has mentioned it to me yet.  I am curious because my maternal aunt was just diagnosed.

I am at a teaching hopsital now, and that's where I finally found answers & a diagnosis for my auto immune disease.

The Effexor was added after the fact to combat the depression from the predisone, it has not increased the dryness.  It has worked to combat the depression and I feel much better on it.

I am still on 30mg of predisone a day and hope to step to down to 20mg next week.  I've been on high daily doses for 3 months, and finally have skin that is without sores!! YAY!  I am still so dry that I leave skin flakes everywhere I go, but its getting better.

I have no idea if the Plaquenil is working or not.  I was told that it wouldn't take effect for a few months.  I take it faithfully twice a day.  A heat wave hit us a few weeks ago and everything went south for me.  My rash was out of control, I was peeling everywhere and I couldn't stay awake through the day.  Now that the heat has subsided, its better.  For what its worth, I wear long pants and 50 SPF long sleeve shirts from REI & do not get any direct sunlight.

I am using eye drops throughout the day and gel at night.  I think Restasis is probably in my future.

The CellCept has helped with the tingling fingers and toes, but has made me so tired I have been off work a week.

Thanks for the welcome!   I see the Dermatologist in 3 weeks and the Rhemy in 5, I will ask both about Sjogrens and see what they say

[Patze]

Hi Just_G,

Good luck with your testing and at your doctors! 

Hang in there and please update us when you can.

Take care -

Patze