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Kathryn, I'm sorry you are in pain. I know what it's like to not let that stop you when you want to spend time with the grandkids. That is the best thing in the world, isn't it?

TinaMarie, thanks for your response. Actually, my rheumatologist corrected me by saying it is connective tissue disease and not mixed connective tissue disease. I'm still learning about all of these different terms and so many different autoimmune diseases. Sorry to hear of you having to wait for disability to kick in. That waiting game is tough.

Update on my situation: My rheumatologist advised me to stop taking the generic Plaquenil because it was causing so much itching all over my body. I've been off it for 2 weeks. So now I'm waiting to see if my insurance company will approve the brand name Plaquenil. I seem to be having a flare right now. Every afternoon I feel exhausted, and like I'm coming down with the flu. I usually need to go to my car at lunchtime and take a 20-minute nap. I do have a bottle of Prednisone my doctor prescribed for me, but I guess I'm not sure when I'm supposed to take it. Do I wait for a more severe flare? I know there are bad side effects to it. It did work wonders when I had an injection of it when I was first diagnosed.

I'm also wondering about my skin. So far, I haven't had the typical lupus butterfly rash, but lately I have had some type of rash that looks like the beginning of a breakout - a little bit on my nose and also some on both sides of my nose. Red and sort of raised. This comes and goes. I've also noticed a red raised rash on both arms after being in the sun this summer. Not bad by any means, but I have a super fair complexion and I have always limited my sun exposure anyway.

Take care, everyone.
Amanda, thanks for your input. You said your diagnosis was changed to lupus based on your blood work, if I understand. Can you please tell me what blood work it was and the numbers? Thanks so much.

Today I did get approval from my insurance company to take brand-name because the generic hydrochloroquine was causing me so much generalized itching. What's funny is that the first batch of generic I had obtained did not give me any problems, but the second refill did. After being off the hydrochloroquine for a month, I'm really starting to get some symptoms back, so I sure hope I can tolerate this brand-name Plaquenil. Will keep you posted.





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