My boyfriend was on prednisone for about a year. he has Cronic Obstructive Pulmonary Disease (copd). On April 6, 2008 he went into the hospital for pnumonia, the next day he was on life support... The doctors said he would never get off of life support...
He is now off of life support & now is home after 61 days... Doctors can be wrong on some things.
He was given all kinds of medicines... Later, he had a trachostomy & because he was on prednisone he ended up paralyzed from taking prednisone. The doctor called it prednisone myopathy.
He said he could be paralyzed for a couple of weeks or up to or past 1 year. He also said that one percent people who take prednisone get myopathy.
I hope this information is helpful...
Take care,
Alecia
I have recently been diagnosed with steroid myopathy. I have Crohn's disease and have been on and off prednisone for the last 30 years, sometimes at very high doses and for long periods of time. I have had some muscle weakness for the last 10 years but has increased ten fold the last year after I had a short round of prednisone. I have seen a neurologist who confirmed the diagnosis of myopathy. My issue is that the Dr's have told me that there is nothing they can do for me, to take tylenol when the pain is bad and to continue exercising and stretching. I take my dog every day for a 30 min walk and have made a point to do the same walk everyday to try and build up my strength, I have pain and weakness. After 30 days doing this walk I am in as much pain today as I was when I started 30 days ago and if I extend the walk on days when I feel stronger it causes additional weakness. I am otherwise a relatively active healthy 50 year old woman, my disease is in remission and I have been off the prednisone for 8 months yet the muscle weakness is not improving, actually some days it seems to be worse.
Can anyone out there give me some advise on how to improve my muscle weakness. My mind wants to get up and go yet my body doesn't feel like it has the strength. Help please.
Hi, I have steroid myopathy after receiving high doses of prednisone for pneumonia. I was unable to walk for about 3 months and was in a nursing home and it took til the last month working with physical therapy I was able to walk. I am about 8 months out from the onset. Physical therapy with a good physical therapist seems to be the best remedy. I too have days when I feel like I'm worse, and some days a lot better. I do not exercise on my own as consistently when I was in physical therapy rehab. I take tramadol for pain when I need it. I'm still on 10mg of prednisone. My Drs have told me it takes MONTHS to get over this. They are right. I suggest you get into physical therapy if you can. Hope this helps
ps. My neurologist also recommended eating lots of high quality protein. He did not say how much. Hope your not a vegetarian.
Thanks for info. I am so scared I will be a cripple. I have been on prednisone for 40 years due to addisions disease and in Aug 2012 suffered a addision crisis which meant large, large doses ol steriods to bring me back. I have pain an stiffness in my calfs and it does not go away. I am still going down on the steriods and am at 15 per day now (was 60) but can never go off them. I have the neck thickness and cushings syndrome. is there any hope for me to have some recovery in my legs, I believe my arms may be affected too.....
I don't know if you'll fully recover or not. I'm not a Dr, just another person with steroid myopathy. I always think there is hope esp if your going down on the steroids. It seems to me the myopathy sets in after larger doses than what a person normally takes. I probably won't ever be able to get off of the steroids completely either. I asked my Dr about more weakness after exercise and he told me it was because I was weak to start with but he asked if my general trend was improvement......and it is. I was unable to walk at first and I too was really, really, scared but after I got with the right physical therapist, I started walking again but it was not easy. At first people had to pick me up to put me in the wheelchair, then I learned how to slide on a board and then I started to be able to stand. It took a months. Recovery is very very slow. It has helped me to keep a log of my progress. When I make an improvement, like going from the walker to using a cane, then going without the cane into the grocery store........I write it down. So I don't get discouraged and I can see my progress. You might want to try that too. Personally I think being able to walk with your dog for 30 minutes at a time is GREAT!!!! I wouldn't be able to do that yet. Keep working at it and try not to be scared, just know in your heart that you will do what it takes to get better and know it really takes a long, long time to recover and no one can give you how long that will be. I hope you find a good physical therapist. I do arm exercises too with light weights. I wish the best for you and know there are others out there that have been where we're at.
Your story describes my current situation. Have you found any help yet?
I was shocked to read all the posts here because this is exactly the path I've been on for the last 15 years, I've been trated with prednisone for sarcoidosis on and off since '84. The myopathy was not noticeable for the early years but no matter who I have approached at my GP surgery or consultants offices no one has offered a solution, now I realise far more agressive tactics are called for!
I just sent reply to Chris Won and forgot to sign my name or email. Elisabeth....
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