prednisone reduction "WARNING"

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Just a note to all who are on pred and who will or are tapering off pred, ....... I just found out something the hard-way.

When we are in the tapering off phase of pred, we are not getting enough hormones/testosterone support from glands to support our bodies being under sickness or stress. Stress includes "hard work" I've now learned!! I'm mostly a buck up kinda guy, I push thru stuff and "get-r-done" ..... amazingly that really backfires while tapering off from pred. When I take on projects (remodel house, split wood, do lots of physical work, etc) I will ussually drop a few pounds and gain muscle mass, however this time around I felt I was actually getting weaker and not lossing much weight. I use these hard work periods to push myself and keep in reasonable shape.

It turns out after visting a DR, and reading the instructions that came with the pred prescriptions, (not all of the pharmacies list this side effect) that instead of building muscle, I've been tearing mine up. Normally muscle mass is made by tearing and healing, but while tapering on pred we only get the tearing part.

My right arm (I'm right handled) is now (last 2 months) about 1/3 smaller than my left, so is my right peck muscle, and the "V" taper from my waist to my right arm pit is also nearly gone. In doing a house remodel over the last few months, I've pushed myself alot, but its only resulted in tearing away and not the building back up of the related muscles. When my wife stepped back and looked at my body it was very obvious of the damage, all of my upper right side is smaller. I'm taking pics into my next visit with my sarc DR.

Soooooo if you work out or doing hard work and are tapering off from pred, its going to back fire. Just take it easy, pushing thru will only hurt you. Also, if you are under physical stess, the pred taper is going to hurt you and not help in your recovery.

I really wish someone would have told me about this side effect, I will not be able to regain the lost muscle until fully off pred and then for several months.

Just another downer to taking pred I think if I had it to do over again, I might try metho 1st.

PS, yes, I also get the standard joint/muscle/bone pains coming off pred. Currently have a pinched nerve in neck that I suspect is pred related, .... yea, it hurts like hell. Sooooo while my sarc Dr thinks my sarc is slightly better, I'm in worse shape than when I started!

Harmles2

7 replies

I am also being weaned off prenisolone, but I was coming off the drug too quickly, and I was getting very tired. My doctor did some tests and has now found out that I have steroid induced Addisons disease. This means that my body cannot produce enough cortisol, a stress hormone, to deal with doing physical activities. I have had to go back up on my steroid dose and will have to come down alot slower

what about running? do you think that tears muscles apart too much? I've been trying to run if only for 10 to 15 minutes at a time.

how much are you tapering down from? I'm still at 40 mg, going down 5 mg every two weeks. Originally was at 60 mg for 2 months.

dt,

I was at 40mg f/ 90 days, then 20 mg f/90 days, now at 10mg. I was down to 7.5 but had to go back up to 40 for a few days, and re-tapper again.

I do not think running will tear muscles ..... pushing hard when exhausted will. I was doing 5 min of light weights for a while with no issues (just for toning) but the hard core work beat me up.

hope that helps
harmles2

i was on prednisone for 25 years for crohns disease at doses ranging from 15mg to35mg.i have succesfully weaned to 5mg in 2 months with the aid of growth hormone and testosterone.

I am on a taper also. I was down to 2.5 last spring and ended up in the hospital with Asthma and back up to 40mgs again. I have yet to get lower that 4. It took me 6 months to come down 2mgs. Funnty I ended up needing it for Asthma and yet when I try to taper it is the Sarcoid that acts up.
Bunkie

I understand that the adrenal glands and pred begin the "swap" from one to the other in a "typical" person when the pred dose gets down to or is somewhere between 5-10mg p/day. Thats why the amount and lenght of is slowed down at the lower end.

My Dr said anyone on <5mg is likley being prescribed such a low dose for reasons other than sarc, such as a weakend adrenal system.

Lawrence, I've long thought growth hormone might help, ............ however I've also read that after being on pred for >1 yr or more, that a relapse can occur up to 2 yrs later. What specific growth hormone were you on, how much, and how costly was it?

thanks
harmles2

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