Please tell what this means?? can anyone help? - Immune Disorders Message Board

sandrae · 04-30-2004, 07:35 PM

On 4/5/2004 I was sitting at work when my eyes got so dry it was terrible. I tried some drops that a co-worker had and nothing worked. I was on Prednisone 60 mgs taping down to 20 and then back up to 60 and down to 20mgs. On 4/5/2004 I was down to 40 mgs of Prednisone. (I was on the Prednisone for a vascular/sinus headache) I went to an eye Dr. who said that I have really dry eye and he put plugs in. He also told me "You have Sjogrens and some people do OK and some people are plain miserable everyday for the rest of their lives." Nice. i wa hysterical af ter this eye Dr. said this and went to my family practice Dr. (the one that told me to go on the Prednisone and he told me to stop the Prednisone--i was on 20 mgs). I did. Then my mouth started getting kind of dry. Not really dry-just sticky saliva. I went to a rheumatologist who drew blood. ANA was slightly positive on 4/9/04. An ANA taken on 3/29/04 by family practice was negative. Everything else was negative- DNA, homogenous ANA, ESR, anti-SSA, SSB, CRP-everything. The rheumy calls me and says-don't worry about anything-your symptoms are caused by something else. The dry eyes continued and i went to another eye Dr. who put plugs in the upper lids and I had to start on low dose steroid eye drops(immediate relief with tears streaming down my face) but i will have to go off of these in 8 days and I am afraid to do it because i was putting drops in every hour with hardly no relief ! In the meantime, my endo calls (yes, i was just diagnosed with Hashimotos on 3/29/04) and says, "Go back to the rheumy and get all of your bloodwork redrawn- you were on Prednisone when you had it drawn and it could be all wrong!!" As if this was not enough, when I went off the Prednisone suddenly, my face had a terrilbe rebound anti-inflmmatory reaction with acne etc and now I am on Doxyclycine to get rid of it. I am scheduled with an ENT on Thursday to see about scheduling a lip biopsy. I asked the eye Dr. to cauterize my lower ducts and he said, "Not yet, I have seen this stuff improve." I do not know what is going on and i am scared to death. What is this?! Sjogrens? Lupus? Rebound antiinflammatory reaction everywhere from going up and down and off the Prednisone? This all happened suddenly--within two days. i had some symptoms of Hashi's for months like thinning hair and nails but nothing else! No dry eyes or mouth and not a pain anywhere! I am only 40 and the eye Dr.'s words keep echoing, "You may be miserable every day for the rest of your life." I have cried everyday since then. Before 4/5/04 I was walking around without one health problem and now I am a mess. Any suggestions about where I should go from here?

teachergirl64 · 05-20-2004, 07:30 PM

(((Sandrae))) Your doctor says you may be miserable everyday for the rest of your life. The flip side of that statement is you may not be miserable every day. You need to get to an opthamologist and tell him your symptoms. He can do a couple of test in his office and you will get a diagnosis before you leave. If it is Sjogren's once you find something that gives you relief, life should get better. Lots of autoimmune disorders can cause dry eyes. I'd be careful stopping the prednisone cold turkey. I think you are supposed to taper off the prednisone. You can't just quit. Your adrenal glands need time to adjust. I think you do need to get your labs redrawn. Hashimoto's is an autoimmune disorder and many of those disorders can cause a positive ANA. Until you know something, try hard to not stress out over the possibilities. I do understand how hard that can be, because my internist is positive I have lupus but the rheumy doesn't agree even though I have enough criteria to meet diagnosis. Anyway, even if what you have turns out to be lupus, it's not the death sentence it used to be. There are meds that can help control it and remissions are possible in any of these diseases. Don't lose heart.