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Old 12-20-2011, 02:38 AM   #3
giamarie12 giamarie12 is offline
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Join Date: Dec 2011
Location: Philadelphia, PA USA
Posts: 21
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Re: sjogrens syndrome/very frightened.

Quote:
Originally Posted by gdiluca View Post
Welcome to the rare disease club. There are certainly treatments for Sjogren's now, even if there is no cure. I have secondary Sjogren's to CREST, a form of scleroderma, and understand your fear. But these diseases can be managed so much better than in the past. LOL, on another place on the internet there is a lady who is 80 years young with scleroderma! I think we all go through that fear stage in the beginning, but as you go forward with your treatments it gets easier to handle. I might also mention that most of the time, when you do research on these rare conditions, you only get the worst case scenarios, to make everything even scarier. AI diseases are notoriously difficult to diagnose, and getting a name to your particular disease, if you've not got positive blood work to point to any one direction can take years, and doesn't seem to be that uncommon. I'm just a patient, but there are many treatment options besides steroids nowadays. I guess that's why they call it medical "arts". I guess I wanna say, cheer up and enjoy your daughter and the holidays! AI diseases such as Sjogren's are not automatically death or even disability sentences any more! Take care and let us know how you're doing!
Thank you so much for your reply. You made me smile and have given me much hope. I thank you for your knowledge and encouragement. It seems since I moved from Philadelphia that I am in an area with such limited medical knowledge. I returned back to Philadelphia to see my rheum again and low and behold I finally got a diagnosis. It is just that the Plaquenil did not seem to touch my symptoms and tapering from the Medrol brought back so much pain again in the spinal area and knees along with that horrible fatigue. But my nose is running again after years and you know that horrific brain fog seems to be lifting a bit. I know this drug takes months to see improvement. I am just so tired of dragging my body around I suppose that I want a quick fix. Unfortunately, I cant take methotrexate another allergic reaction to that. But none to Plaq. just some slight itching. But no bid deal. Thank you again and have a great holiday too. I will be adding people that I dont even know to my thoughts and prayers. You have given me hope and you know, what else can I ask for now. Take care of you.
Dolores (Gia Maries' Mom)

 
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