Question:
Hi everyone, I’ve posted a few times in despair waiting to be diagnosed. Finally…I am not nuts. Thought things would get better but no luck. PCP says I have lupus, RD says I have RA, FMA &MCTD. Beats me. I was put on Paxil, Elavil, Aciphex, Pred. 40mg. day, lasix, something new for IBS and I’m sure I’ve forgotten something! The pred was great at relieving inflamation and pain but I started getting a lovely hump on my neck and a real fat face. Yup, Cushings’ syndrome. I reduced the pred. 5 mg every 2 weeks until I was off it. Then about a week later my chest hurt. Okay, so now its pleurisy. Back on the pred 30mg. and back to RD Monday. I feel pretty sure my reactions and feeling are common but it would sure be nice to hear that theres, at least emotionally, light at the end of the tunnel. Thanks for listening, Julie
Response:
<<I’ve posted a few times in despair waiting to be diagnosed. Finally…I am not nuts.>> And I’ll bet you never were nuts either. It just took awhile to convince the doctors. << PCP says I have lupus, RD says I have RA, FMA &MCTD. Beats me.>> Well, the rheumatologist is the expert in this area. MCTD, by the way, usually includes elements of lupus and scleroderma. There are definite diagnostic criteria for it. As for RA, it’s systemic like lupus and could be confused with it. It’s happened before. The arthritis though is always inflammatory. Just to complicate things, with lupus the arthritis can sometimes be inflammatory as well. << The pred was great at relieving inflamation and pain but I started getting a lovely hump on my neck and a real fat face. Yup, Cushings’ syndrome. >> That sounds typical of Prednisone. My daughter has gone through this too. It does go away as you decrease the dose of Prednisone. Decreasing the dose though can be a challenge sometimes as you’ve discovered. << I feel pretty sure my reactions and feeling are common but it would sure be nice to hear that theres, at least emotionally, light at the end of the tunnel.>> This is the part that my daughter should answer. I can only tell you that it was very difficult for her too when she was first diagnosed. She felt depressed and cried a lot (not characteristic of her under normal circumstances). However, over the next three months, she came to some kind of terms with her illness and accepted it. That doesn’t at all mean that things are always easy or that she doesn’t still have her moments from time to time. For the most part though, she has a positive attitude about life again. Sandra
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