Prednisone Withdrawal

[Psyborg]

Bob, that seems to be the $64 question. I hope you can get off pred and stay off without any ill effects.

Dr VF has already said I'm not going to probably get off again. We are aiming for 3 mg a day as I always flare when I've gotten low. Though I might try again if I can feel pretty stable at a lower dose. Just hate to flare and necessitate the RTX if I have things controllable with a little Pred.

[BookNut]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

That really must be a challenge. It is very possible that you have Wegs pains, AND some "ordinary" pain as well. I have "ordinary" arthritic and other back pain. A lovely side-effect of the pred that I take for my respiratory issues is that it makes my ordinary pain go away. I usually am on a 40mg 16 day taper. Almost immediately, my "ordinary" pain goes away, and as glad as I am to get off the pred...I miss it when my old "friend" the back pain returns. So hard when you are looking for two kinds of pains.

[Debbie C]

I haven't been able to get past 5 either. I get shakes ( like an anxiety attack ) and pains all over and that's when I even tried dropping it by 1/4 at a time.I am still gonna try to shake it again but I am feeling preety good now and I hate to rock the boat. But good luck to all that are trying...hope you can make it with no problems.

[annekat]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

This confuses me, too. If the immunosuppressant is supposed to be what's controlling our disease activity, then why would we have to depend on pred to keep from flaring? My first flare, the doc focused on raising the MTX, which was only at 10mg./wk, to 15mg., and it worked, but the pred was also raised. The second flare, he left the MTX at 15mg and raised the pred. The logic of it is hard to figure out, but it's not just him, I find myself being intuitive about it instead of logical, and have gotten pretty good at sensing what's going on with the meds. So, while being somewhat arrogant, my doc doesn't have much experience with WG and actually listens to me and lets me talk him into stuff, after a small amount of resistance. If my inflammation levels are still at all high next time I go in, I'll suggest raising the MTX a bit, maybe to 17.5mg. Incidentally, this week I forgot to take part of my split MTX dose, and a mild WG rash of small red dots appeared on my forearm. Barely noticeable, but I know what it is. I took the rest of the dose a couple days later. But the same thing can happen when tapering pred, which I'm not currently doing. So it's hard to know where one med leaves off and the other kicks in.

[annekat]

I haven't been able to get past 5 either. I get shakes ( like an anxiety attack ) and pains all over and that's when I even tried dropping it by 1/4 at a time.I am still gonna try to shake it again but I am feeling preety good now and I hate to rock the boat. But good luck to all that are trying...hope you can make it with no problems.

When first on the forum, I couldn't believe these descriptions of the difficulty of low dose tapering.... people dropping by 1/4mg. at a time and such. It sounded so weird, having been used to the routine 10 day tapers with sinus infections, before ever knowing I had WG. Now I understand about the adrenals having fully shut down and the difficulty of getting them back on board. But it still seems weird.... some people can do it a lot more quickly and with a lot less messing around than others.

[carriej22]

I was on prednisone for a long time. The hardest jump was from 5 down. After I got over the shakes, pain, and cranked my imuran up it was well worth it. I spent 6 months going from 2.5 to nothing. I have been off now since March and let me tell you, it's worth it. I wanted to scream at first. My whole body felt like a giant bruise.

However I feel so much lighter without prednisone.

[annekat]

I was on prednisone for a long time. The hardest jump was from 5 down. After I got over the shakes, pain, and cranked my imuran up it was well worth it. I spent 6 months going from 2.5 to nothing. I have been off now since March and let me tell you, it's worth it. I wanted to scream at first. My whole body felt like a giant bruise.

However I feel so much lighter without prednisone.

Wow. So it seems that cranking up the immunosuppressant helps in the final stages of pred withdrawal. That makes sense. Better to be on a little more MTX or Imuran for awhile than to be on pred forever. Are you still on Imuran, Carrie?

[Alysia]

the prednisone song live The Singing Patient - YouTube

[LisaT]

I love the song, Alysia!

I am trying to get down from 8 mg to 7 and I'm going to have to slow it down… I will take 8 today again because I have a blinding headache and lots of pain… seems more like muscle pain than joint pain, other than my jaw, which hurts when I chew soft strawberries. I'll be making a nice big smoothie soon.

I'm surprised my rheumy, who is pretty experienced with prednisone etc. even if not with GPA, would suggest I go down by 5 mg/week until at 5 mg, then stop cold turkey… Clearly he has never experienced what it's like, and is unfamiliar with adrenal fatigue. Maybe he figures we should rip it off like a bandaid; but if my adrenals are as dopey as I think, that could actually be very dangerous. So I'm kind of making my own tapering schedule, which I'll share with him when I see him next week. Time to go back to the naturopath, too, I think, as they are very good at helping you support your adrenal glands and get them back to optimal function.

I think the response and rate at which we need to taper down is very individual, just like each of our diseases. Proceed with caution! Good luck to everyone who's trying to kick the 'habit'.

[carriej22]

Wow. So it seems that cranking up the immunosuppressant helps in the final stages of pred withdrawal. That makes sense. Better to be on a little more MTX or Imuran for awhile than to be on pred forever. Are you still on Imuran, Carrie?

Yes Ann, there has been no move to take me off Imuran. I bean Imuran in October of 2012. Will probably be on it for... Ever? I don't know. There has never been talk of removing me from Imuran.