Hello:
My name is Jenny and I've had SS since 2004. I have been in denial for a long time and tried to find other reasons for my symptoms, although, I don't have typical primary SS symptoms of dry eyes/mouth. My symptoms have been mostly arthritis and fatigue until last October when I developed pins & needles in both my arms, hands and fingers then in January I had a cold which lead to polymyalgia rheumatica.
Last October I changed rheumatologists (thanks be to God) because I felt as though my previous rheumatologist patronized me by ignoring my symptoms. In 2004, I moved to a different part of town and had to change dermatologists. During that time, I had what I call my "MAC truck feeling" you know where it feels like a truck has run you over and then has backed up and parked on you!! My face was very red and the dermatologist said he was going to run some tests. The ANA was positive and my SS-A antibodies were positive but everything else was negative. I was referred to my 1st rheumy. The one who patronized me. No other workup ensued and I believe this is why I didn't want to accept the results.
I was started on plaquenil and stayed on that drug for years although I kept telling my rheumy that I felt no difference on the drug. I also was on prednisone and tried methotrexate. I wanted off the pred because of weight gain and methotrexate only worked for a short period of time.
With the new diagnosis of PMR, I was started back on pred (much to my dislike) but I virtually couldn't get out of bed with that much pain and since starting on pred I am feeling so much better. The good news is that it is a small dose of pred now 8mg. I love my new rheumatolgist. He listens and takes my concerns seriously.
I hope to inspire others and to learn from those of you on this forum.
Jenny ;D
Hi Jenny :)
Welcome to Sjogren's world. I have a friend who has PMR but not SjS. Her doctor was very hopeful that after treatment it could go into total remission. SjS is a lot less likely to.
I hope you find the forum useful. It's certainly friendly and supportive.
I'm sorry Plaquenil din't work for you. What dosage were you on? I was on 200mg per day which didn't work. 400mg per day helped but it took about 6 months. I've read that some people have come off it thinking it wasn't working and then have had extra pain and realised that it was. I'm lucky - I know it's working because my blood tests are a whole lot better than they used to be.
Take care - Scottie :)
Scottie:
I do have SS because both my Ro & La antibodies are positive, however, my recent lip biopsy was negative. My rheumy told me I'm special (don't think I want to be that special!!) since both antibodies are positive but yet my lip biopsy is negative. I don't have dry eyes or mouth but other antibodies remain negative that would identify other possible autoimmune disorders. When I was first diagnosed in 2004, my ANA and Ro antibodies were positive. Since finding my new rheumy, he has retested my antibodies and now my La antibody is positive too.
PMR is a type of vasculitis and as you probably know vasculitis is common in SS and other autoimmune disorders. I had a URI exposure in December and very quickly developed PMR. When I started on pred at 15mg, my symptoms quickly went away which is diagnostic of PMR. The PMR is the first complication I've developed since being diagnosed with SS in 2004.
I was on plaquenil since my diagnosis in 2004 but since my PMR episode this year have been off of it. I've heard the same concerning plaquenil but I don't want to put my eye sight at risk with that drug. The pred has helped the pain in my shoulders, arms, neck and hands. On my next rheumie visit we are going to discuss Imuran or Cellcept so I can get off the pred altogether. I'm hoping that Imuran or Cellcept will control my pain symptoms.
Thanks for responding.
Jen
Hi again Jen :)
I've just read what I wrote before and I didn't put it very well! I didn't doubt for a minute that you have SjS, which unfortunately doesn't often go into remission. It's good you respond well to prednisone.
I've been on Plaquenil for 6 years now and I see an opthamologist every 6 months. I've luckily had no side effects and my vision is the same as it was when i started but my blood work is btter and my eyes are slightly more moist.
Take care - Scottie :)
Hi Jenny,
Let me also welcome you to the SJS World and family! Please do look around as there are tons of topics to available, and scads of really great members to meet as well!
I'm glad to see that you're feeling better on the pred, and even though I've never used it, I'm glad to see that it's working for you!
Like Scottie, I too have been on Plaquenil for several years now and I'm thankful that it's helped me too (it took almost six months to really kick in).
I hope that I get to chat with you soon!
Take care -
Patze
Hi Jenny,
I also want to welcome you to Sjogrens World and hope that you find some useful information, comfort, and friendship here on this site. If you have any questions feel free to ask....and if you have anything you want o share...feel free to jump in whenever and wherever you feel comfortable!
Thank you all for welcoming me to this site. I do have a few questions though....has anyone had positive antibodies but a negative lip biopsy? Has anyone been diagnosed with SS without dry eyes/mouth. I have always had the arthritic symptoms and fatigue. I have read that after diagnosis it can be 5-10 years before developing dry eye/mouth. Does anyone know if that is true? I appreciate any information or direction to websites that would address these questions.... ::)
Thanks again. I look forward to getting to know all of you better.
Jen
Hi Jen,
You'll find looking around that each one of us is a bit different in how the symptoms have manifested. Some lucky members have never developed any symptoms/problems (just have the positive blood work), while others have some awful symptoms/problems caused by SJS and are as negative as it gets, and everything in between. I wish I could tell you what you will have to face living with SJS, but in my little ol' humble opinion, there's no pat answer where SJS is concerned as it affects each of us so differently.
By chance, have you seen www.sjogrens.org (they support a lot of research on SJS)?
Take care of yourself -
Patze