Hi. I'm frustrated. I've been on Prednisone for months and months and we've been trying to wean me off. My first attempt was met with headaches, nausea and aches & pains. So we went back up on the dose and decided to try again in a little while.
The second attempt was met with really bad muscle and joint pain and fatigue and so we upped the dose and decided to try again in a little while.
Now we're trying again. I've got muscle and joint pain, though not as bad as last time, fatigue and I think I've got a rash on my hands and chest and neck. Also, my eyes, which have been so much better lately, have started bothering me again. I'm very eager to get off of the Prednisone but I just don't know how!
I'm not scheduled to see Dr. Schuster again for another three weeks. I guess I'm going to have to call him though to see if I should just "tough it out" or not. I'm leaning toward "toughing it out" as long as it doesn't pose any real danger.
I'm trying to be there for Mom but really all I want to do is stay in bed and watch old movies.
OK, so now I've vented a bit and you know what's going on. Will update again when there's news.
Thanks for being there. Believe in Miracles!
this is my first log-in after a long time. refuah shelaimah to your Mom, sounds as if she is recuperating quickly. My doctoring experience tells me that if you've been on prednisone for loooong time, weaning also has to be done very slowly. Best wishes from everyone here, and enjoy the snow. Love, Alvin and the gang
ReplyDeleteLeah,
ReplyDeleteI am completely off it now, but have only been off for a little while, and although I am sorry you are having such pain and frustration, it is a little reassuring to know that I am not the only one having issues. I am having the worst muscle pain in my back!!! I can't even sit up for long periods without feeling like my back is on fire. Anyway, I will be praying for you. I know the last time I was being weaned, my transplant doc just did it the way they are trained to wean people, and he even said that each person is different and it's not an exact science. He sent me to an endocrinologist to help with the wean, and she helped A LOT! Maybe (although another doctor's appointment is probably the last thing you want to do) you should check with one to see if you should maybe wean slower, or take a weaker kind of steroid to help with the wean. Let me know what you find out. I go see the Opthamologist on Jan 4th so hopefully I can get my eye problem fixed too. Keep in touch - love you lots.
Hugs and love always,
Marsha