Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Prednisone - long term?

I have a concrete diagnosis, but no doc will consider biologics because of the cancer risk. I probably couldn't tolerate them anyway, because I'm so freaking sensitive to everything I ingest. I get AMAZING pain elimination from 5 mg, and fairly good from 2.5mg.

I get total pain relief and full mobility with 5mg. And quite good both with 2.5 mg.

Thanks Betty Curcumin is a salicylate. I try to eat only light colored fruits and veggies, because I'm super sensitive to salicylates. If I eat Indian food once I bruise for a week, and if I eat high salicylate foods for a few days I vomit for hours.
Cinnamon, curcumin, boswellia, cayenne... the list is long. Here's a good page to take a look at. Pretty much anyone who's allergic to NSAIDS will be sensitive to salicylates. But I took them daily for 40 years. Peace, Erica

That whole gut thing is probably why I was taken off prednisone as a kid. I was so skinny after a couple of years of taking it and I hated eating anything but candy. As I recall I took high doses. Now I'm just talking about a low dose, such as 2.5 to 5 mg per day. I'm ANA+ and my sister has lupus, but the only thing I ever get (knock wood) is the butterfly rash when I get way overheated. So I don't do that. I already have the hump, have had it since then, but it's not huge. It is a love/hate thing for me with all meds.

Ummmm... using the hubby as a guinea pig? I think there's a movie out about that. LOL

Hi

I noticed you mentioned you have a high risk of cancer . Have you had cancer ? I would talk about your rheumy about the biologis again .

Janet

I haven't had cancer, but the doctors have all ruled out biologics. With me, the likelihood of cancer is combined with the allergy to NSAIDS and paradoxical reactions to most other meds.

...and I just got a call from my doctor's nurse. She said the doctor wouldn't even prescribe it if I could get the rheum to go along...

NO PREDNISONE!!! BLEEP BLEEP BLEEP!!!!

I would have been shocked if a G>P would prescribe daily prednisone for long-term. Give the Omega 3's a good try.

Janet

Sue, my doc said that short courses (week to 10 days) up to four times a year maximum. Thats pretty much what they say for MS I think too, so sounds sensible. The other GP seemed to think that 5 mg a day could be fine for a year or two. Not so sure I'd trust that, because it does seem that folks here have had problems with that kind of level long term.

Erica, maybe even if your docs won't consider pred long term they might consider short bursts every three or four months? or IM steroid injections a couple of times a year? If you can live with the utter frustration of it wearing off (and desperately wanting to keep going with it but not being allowed to) then those short courses might work. They definitely make it possible for me to keep going, though I'd kill for the same kind of relief long term.

another idea is to see a naturpath about hydrocortisone. my naturpath wanted to put me on a daily low dose of that (5mg? 4mg?). and my rheumy said that while he never had a patient try this, he was open to the idea if i researched it thoroughly, talked to the endocrinologist about the idea, etc.

but i was the one to decide it would be no different or not much difference than being on 5 mg pred or methylpred a day, and decided i didn't want to go down that path (myself).

and wanted to see if i could just get by with using methyl pred for a week once every few months.

but if you want to be allowed to try it, then maybe try this route. or talk to your rheumy.

i'm like you. just a little bit of pred (the 4 mg tablets) go a long way for me. even in a flare, they seem to work wonders at ending the flare almost right away.