Hi Jen- I don't have advice, but I have been experiencing the same symptoms. It is tough, but I continued off the pred and I am just dealing with it because it is bound to get better. I take zofran for nausea and sleep a lot and eat very little. I talked with my dr and she was fine with me staying off and helping with the symptoms. I think I am struggling so much because I am in a major flare (going on 11 months now) and I have failed all meds so far but Pred, but I refuse to stay on it or go back on it. I know this doesn't help much, but I am thinking of you and hope you feel better soon.
Hi Jen- I had severe weight gain (70 lbs in 12 weeks). It is a nasty drug. Maybe you are tapering too slow. I went 15 to 10 to 5 to 5 everyother day and then done. It probably wasn't too smart, but I was so miserable on it. I get headaches too and I would use gel packs to ice my head and neck. I would also take showers to help relax me. I know tylenol isn't the best, but I would take tylenol pm at night and just rest all day. I have little kids, so my house is trashed, but mentally I couldn't bare the thought of more pred. I wish I could take your pain away. I asked my dr why we have to suffer so much and she said it's a horrible nasty disease. I can handle a tummy ache, it's everything else that is so hard to deal with. It wouldn't hurt trying to go back up on the pred. You will know if that helps pretty soon after I would think. You're in my thoughts and keep us updated.