Posted , 6 users are following.
Hi: I have been on prednisone for 20 years and have real bad muscle atrophy. The last 5 years I have been on only 10 mg. If I tapper off the prednisone And start phy. therapy Will some of the muscle come back. I can bearly walk or make steps. Please Help Tom
0 likes, 9 replies
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EileenH Tom3300011611
Posted
Why are you on longterm pred at that dose? What will the result be if you taper off the dose you apparently need? If I stopped taking my pred I'd probably be in so much pain I would be immobile again - so i wouldn't win!
I am also on long term pred and with one form of corticosteroid I had severe acute muscle wasting - when I was switched to another form the muscles all came back to normal just with walking.
It is recommended that all patients on long term pred are given appropriate exercises to help reduce the risk of muscle atrophy - the trouble is, most doctors ignore the idea. You could ask to try a different form to see if that would help as it did for me.
Lane227 Tom3300011611
Posted
I'm at 8 mg., 15 years. Rheumatoid Arthritis. Never made the connection between Prednisone and the muscle weakness in my right arm until I read your post. Interested in the responses you receive.
dorothy_94694 Tom3300011611
Posted
I also have prednisone induced myopathy. Mine is in my thighs and I have had to give up a lot of activities I enjoy. My specialist said that the condition is irreversible but that I should be exercising to prevent it from getting worse. I have therefore joined a gym and try to go 3 times a week. It is helping with my balance and walking but it is a slow progress as I can do very little on the machines or resistance routine. I keep trying and hoping I can cut down on the prednisone soon (presently 20mg a day)
EileenH dorothy_94694
Posted
dorothy_94694 EileenH
Posted
Could you send me the name of the streroid you are now on please?
I am seeing my doctor in Vancouver on Thursday and would like to ask him about it. Many thanks, Dot
EileenH dorothy_94694
Posted
It's nothing to do with the brand steroid in particular, it is the difference between being on methyl prednisolone and being on prednisone for me. There is also prednisolone and hydrocortisone (it can be used in PMR although it requires more than one dose a day).
I am now on what is called Rayos in the US, Lodotra in Europe. It is just a delayed release form of prednisone. It is extremely expensive in the US - although when it has been discussed before on here we have been told it is possible to get it from on-line pharmacies for about $60 for a tub of 30 tablets - which means up to $180 per month to make up a dose where you need multiple tablets. I think it is unlikley the Canadia system would fund it - the UK doesn't!
My point was that your doctor is not entirely correct - it is reversible.
hindags EileenH
Posted
I asked my rheumy about the timed release prednisone since the nighttime cytokine cascade seemed to continue for a bit after starting Pred. I thought it would make more sense to have it on board at that time of night. Anyway she said that Kaiser, my HMO here in the US, doesn't prescribe Rayos because it makes slow titration difficult. They also don't use predinosolone. I don't remember the reason, maybe similar, or just habit.
EileenH hindags
Posted
REALLY? Ah well - I am the Queen of slow titration and it works fine for me.
See this post for a method used by many on the forums, and quite a few rheumies too.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
It comes in 1, 2 and 5mg tablets - what smaller denomination does he want? Medrol only comes in 4 and 2mg tablets at the low end - and getting 2mg ones seems a performance judging by people on the forums.
Rayos is prednisone. Prednisolone is rarely used in the US or here in Italy but is standard in the UK - no idea why as it bypasses the liver so for anyone with liver problems is better
dorothy_94694 EileenH
Posted
Hi Eileen, I have now spoken to my specialist about the drug you are taking and he says it is not avaiable at all in Canada. I am starting to reduce the prednisone again but very very slowly...1mg per month. Maybe sometime next year I'll be free of it!
Dot