I can totally relate to the seemingly impossible task of completely getting off prednisone and feeling like crap because of it.
One thing that has been a game changer for me is hormone therapy. I had a stigma I had to overcome around this subject but it has really made a huge difference. (I'm specifically speaking about testosterone.)
Due to all the UC drugs, I was severely deficient with so many "endo" markers, and testosterone has helped drastically. (Not to mention its actually used to treat UC in some cases.) The biggest difference is that it has given me energy, better sleep, mental focus and honestly just a better outlook on life. Prednisone I feel like literally sucks the life out of me, and testosterone counteracts a lot of those negative symptoms. (even bone and joint health)
Its good your going to see the endocrinologist. I would ask when they do your blood work (I'm sure they probably are anyway) to check all your hormone levels too. I know low testosterone can also greatly effect thyroid as well.
I also started getting iron infusions, and vitamin B shots. Due to loss of blood and I think prednisone also contributes to anemia, which directly effects your energy levels.
Just my two cents.
Thanks for your response! I already take DHEA and pregnenolone. I agree with you that somehow prednisone contributes to anemia. I know that it suppresses bone marrow which leads to slow red blood cell turnover, but I think it directly affects iron absorption somehow. No proof of that, just my suspicion. Whenever I can get off prednisone completely, my iron absorption comes right back. As long as I take pred, I need iron infusions.
I haven't had serious inflammation for about
5 months or so, but getting off pred has been a nightmare for my adrenals. I've still needed iron IVs this whole time.
DHEA and pregnenolone are super helpful. I have managed to avoid serious damage to my body from pred by taking those. It's incredible to me that doctors don't at the very least prescribe pregnenolone when people on are on prednisone. Preg was used before pred was discovered in the 1940s as the primary treatment for inflammaton. Without it, pred would have destroyed my body.