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Keep us posted on how things work out for you. I personally think a gluten-free diet wouldn't hurt any of us. My diet is already so restricted, I have been reluctant to try it. Mainly I want only foods that are soft, am wondering when I will just break down and buy baby food.
I am still on Prednisone (low dose) and Dapsone 75 mg and will be on these for life. Blistering mainly in mouth, lips, throat and nose. I have some flair ups on other places like anal and vaginal, but not bad.
My side affects either from disease or medications are still the same, dizziness, extreme fatigue, confusion, tremors, nausea and pain deep achy pain like coming down with flu. All these side affects come and go throughout my days sometimes worse than other times.
I still have hope for all of us though, there are many doctors and other people who are working hard to find answers for us and help us to achieve the quality of life we once had, or at least close as possible to it.View Thread

I have been on prednisone for 2 years now, having tappered down to 5 mg three times a week. Have been on dapsone for about that long as well. Had tapered down to 25 mg every other day, but now am back up to 50 mg per day. I still have active lesions in my mouth, sometimes in the back of my throat.
I turn 51 years old tomorrow, I had a heart attack in 2005, due to blood clots traveling through a hole in my heart between upper chambers. Didn't know I had it until the heart attack.
I have felt horrible since being on prednisone, at least I blamed the prednisone. I've been very weak dizzy and sick at my stomach and can't focus well, both mentally or visually.
Doctor has me on 320 mg aspirin because of heart, I take lupron shots every 3months to keep me from menstruating, because I don't stop. I take warfarin, to keep my blood thin, because I have a clotting disorder, had developed dvt and pe. I take blood pressure med and B-6. I take tylenol athritus, and tramedal when I hurt which is a lot lately.
My complaints are, dizzy, weak, and hurting all over. Sometimes I feel like I'm trying to walk through jello, I feel I have poor muscle control. If this is caused by my meds, I wouldn't know which one. So sorry for the length of this.View Thread
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