Prednisone

[KenL]

I was diagnosed with WG on 4 Nov 2011 and was given the standard drugs. (Cyclophosphamide,prednisone, bactrim, and azathioprine.)I achieved remission on 6 June 2012.
Over the months I was able to stop most of the above drugs.I am currently still on Bactrim and Prednisone.The lowest I have been able to drop the prednisone was 5mg everyother day. However, I would get extreme muscle pain.This pain went on for the next few months.Later when I was admitted to the hospital with pneumonia and was given a large dose of prednisone for a few days. My muscle pain went completely away.After a few weeks of “weaning” I got back to 5mg per day.The muscle pain started again in the arms/legs so I went back up to 5mg twice per day (10mg) and the pain again stopped.
Question:Is anyone having the same problem trying to get off the Prednisone?
Thanks for any input you may send.
Ken Lien

[drz]

Many people with GPA find they need a small amount of pred to feel OK and do well. Some are lucky to get off it totally but many stay on a low maintenance dosage.

[vdub]

Hi, Ken! Been meaning to get up that way and give you a call....

I was off pred for a long time -- about 3 years and it was really no fun. I had no energy of any kind and lots of pain. About 5 months ago, I was put on 5mg pred and 100mg/3xday gabapentin and I haven't felt this good in 5 years. I am certainly getting a rounder shape from it, but my weight has actually dropped. My energy, however, has really taken off. I finally feel good. So, for now, I'm not even considering going off it. Kind of odd, though, I almost have too much energy -- I feel myself getting physically drained, but I'm still not slowing down. I'm going to try to hold on to this feeling for a while. It's taken to long to get here.

I know, what I said above doesn't answer your question. I think the answer would be yes... There is a withdrawal issue with pred that would be beyond the normal "adrenal wakeup" phase. As drz said "some of us just need a maintenance dose". I think I'm one of those. 10mg seems a bit high for a maintenance dose, but if that's where you feel good and your doc doesn't object, maybe you should stay there a while. Maybe try a very slow taper to get at, say, 5mg, but I like the idea of letting my body tell me where I need to be.

[windchime]

Hi Ken. I've had a rough time trying to taper. Twice I made it to 10 mg and had to go back to 20 mg. This last time I slowed my taper down to1 mg every 2-3 weeks. So far I've made it to 7 mg with no major problems other than some muscle aches which I seem to get everytime I go down. good luck.

[Pete]

I was off pred for almost six months last year, then had a minor flare. Went back up to 60 mg for a couple of months, then started taper again. Got down to 3 mg about a month ago, then saw an upward trend in creatinine beyond normal. Went back to 5 mg and creatinine is back to normal. Feeling good also. Looks like I'll be on a maintenance dose of 4-5 mg for foreseeable future. I also take 17.5 mg/wk of mtx and bactrim 3x/wk.

[Jaypfei]

Hi Ken,
I struggled with chronic pain in my feet, hands and knees for nearly a year while dealing with a rheumy who could have cared less. I have a new rheumy and I really expected much of the same attitude when I explained to him this bizarre pain that I had been dealing with. He immediately said that it was Arthralgia and put me on 5 mg of prednisone . Apparently this is common with GPA. While 5mg a day may not seem like much, it was as if someone had flipped a switch and the pain was gone. :)

[KenL]

Thanks to all who provided me with valuable input on the Prednisone "weaning.

Ken

[Debbie C]

Hi Ken ( nice bike ! ) As for your question I am also on 5 mg of pred, have been on just that for the last 3 1/2 yrs ( I think ) Time just seems to fly by anymore. But I was just talking to my kidney dr. who is very knowledgable about wg and he told that drs. would like you to be in remission for 5 years before going drug free. Since I have been trying to wean off, I told him that even at 4 3/4. mg I get withdrawal feelings. Like you aches,pains,shaky. He suggested I wait another year ( where my rheumy at Clevelan Clinic ) just said get off it. I have more trust in my kidney dr. even though I don't have kidney issues he watches over me . But anyway he told me it could take up to a year just to get off the 5 because you have to go VERY slowly. There is also a test he told me I should get,its called a ACTH stimulation test done by a endocronologist ( sp) to see if your adreanial glands are still working. I googled the test and it doesn't sound pleasant but its a way to see if they are working or not.
Good luck !

[drz]

Hi Ken ( nice bike ! ) As for your question I am also on 5 mg of pred, have been on just that for the last 3 1/2 yrs ( I think ) Time just seems to fly by anymore. But I was just talking to my kidney dr. who is very knowledgable about wg and he told that drs. would like you to be in remission for 5 years before going drug free. Since I have been trying to wean off, I told him that even at 4 3/4. mg I get withdrawal feelings. Like you aches,pains,shaky. He suggested I wait another year ( where my rheumy at Clevelan Clinic ) just said get off it. I have more trust in my kidney dr. even though I don't have kidney issues he watches over me . But anyway he told me it could take up to a year just to get off the 5 because you have to go VERY slowly. There is also a test he told me I should get,its called a ACTH stimulation test done by a endocronologist ( sp) to see if your adreanial glands are still working. I googled the test and it doesn't sound pleasant but its a way to see if they are working or not.
Good luck !

My doctors think I will be be on the 5 mg of pred and generic Imuran indefinitely too. I do have kidney and lung damage and diabetes complications so they have concern about my ability to survive another serious Weg attack because of these complications and my age. I have been told many people live for many years taking these meds so they aren't concerned about me remaining on them and it is hoped it may help prevent another Weg flare or at least reduce the seriousness of one if it happens.