Feeling discouraged

Posted , 13 users are following.

This discussion has been locked due to a period of inactivity.

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

33 Replies

Prev
  • Posted

    BTW, one time when I did a short burst of prednisone I had a problem weaning off. I had to go back on another complete burst and then reduce my prednisone by 1/4 pill each time. Talk about gradual!
    • 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!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.