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This is what I am so afraid of. But what is the alternative? If not taking this stuff I wonder what life would be like? I am currently on 15 mg of prednisone. 1000mg Cellcept 2x daily and infusion of Retuxamab. Do you feel the same? That without it life might be way worse?
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Yes, I worry more about having flares than side effects. Flares are harder to deal with for me as they lead to more organ damage. Especially with my lungs. I do not want them to have more damage as I am already at a reduced capacity to breath.
@robinlundblade. @pamelalaa. Both of you are really worried about mycophenylate and maybe getting off of prednisone. Is this correct? All drugs are scarey to take. And they scare me, too. But, I give myself a couple of days to adjust to the new meds and if all seems OK, I go ahead with my life. I’m also on rituximab with hopes of coming off mycophylate. And I’m really working to get off prednisone. Yes, prednisone caused me some problems ( cataracts and osteoporosis). I had cataract surgery and can see without glasses for the 1st time in my life!! And I take enough calcium to keep my bones strong. Yes, take the risk!
What do you think your future would be if you don’t take a risk?
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I’m ready to take the chance. I’ve been on between 10&20 mgs of prednisone for the better part of a year but tapered down to 10 successfully about two weeks ago. It’s so hard. MG, APS, SLE, gout, etc… plus a few ill defined tumors - it’s a lot. My A1c just popped up after my last blood tests and I have facet arthritis and DDD already that’s blowing up, I can tell. I’m mostly in bed but trying to eke out a little more quality if possible. I think for people like us there’s always a trade off with treatment and I’m ready for a little more risk.