Backstory: I was diagnosed with ITP in September of 2016. To make a long story short, after a hospital stay and some dexamethasone, I was in remission for about a year and a half. I've been on Prednisone since March of 2018, in doses ranging from 5mg to 100mg, but most often between 10mg and 40mg. I was diagnosed with Lupus in September of 2019, and my rheumatologist and hematologist are both hopeful that my ITP is secondary to the Lupus, so they're hoping that treating the Lupus (currently with Plaquenil) will also treat the ITP. My platelets have been excellent for the last couple months, so we're trying to lower the Prednisone. I've only been below 10mg once in the nearly two years I've been on it; at 5mg, I was in severe joint pain and was extremely fatigued. So, while I'm hopeful to get on a lower dose (and maybe eventually get off of it altogether), I'm also quite anxious.
We just lowered my dose today from 10mg to 7.5mg. I'm wary of the withdrawal symptoms that I know will start in the next couple days. I know there's not much to do be done about the fatigue aside from resting, but does anyone have any advice or experience on things that can help with the joint pain? I'm trying to have a plan so I can get ahead of the game.
My ideas so far are using the hot tub and doing stretches and exercises in the pool at the gym. I also have a mild muscle relaxer (Robaxin) and Tylenol that I can take when things get bad. (I of course can't take NSAID's because of their platelet-lowering potential.) Any additional advice is appreciated!
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