Feeling discouraged
Posted , 13 users are following.
I'm just having a bad week.
I was taken off methotrexate & humira from Oct-April for a funky lung problem, and prednisone was increased to 20mg. I'm having awful effects from the prednisone -- visible ones like hair loss, facial redness, purple stripes on my belly like a tiger, very round face; invisible ones like abnormal liver functions. I desperately want to be done with the prednisone. But every time I try to taper off (even with an extremely slow taper), I have withdrawal symptoms.
In April I was allowed to try another biologic, Orencia infusions. At the first infusion, I was also given IV solumedrol...and man was that awful. I was pretty sure I was dying. I saw an endocrinologist yesterday, and it turns out that the prednisone has caused adrenal gland suppression. In April, they apparently shut down. This is why I'm having such a hard time coming off prednisone.
I asked him to please tell me how to safely taper off without causing an adrenal gland crisis again. His response was that he will leave that up to my rheumatologist. She's the one who referred me to him! To help with the taper! I couldn't make him understand.
I had an Orencia infusion this morning and feel headachey and awful. It doesn't seem to be working. No matter what I do, or what meds I take, I am stuck in a persistent flare state that never subsides.
The meds are supposed to help, right? I read that people can achieve a remission state. That isn't happening for me and I'm soooo frustrated.
0 likes, 33 replies
timothy11402 karen0310
Posted
karen0310 timothy11402
Posted
Yes; it's awful! I was doing quarter pills too. It takes forever to reduce! Then you have a flare & they jack the dose back up!