Couldn't find what you looking for?

TRY OUR SEARCH!

I have been taking Prednisone for the symptoms of rheumatoid arthritis. I was very worried about starting a treatment with corticosteroids because I know they can have strange side effects but my doctor insisted and said it would be fine. I have a friend who was taking the same kind of drug and she gained weight in very weird places of the body, like on the back of her neck and couldnt get rid of it. Anyway, some time after the treatment I started experiencing pain in the neck area as well as in the limbs. I kind of thought it could be from RA and decided to complain to my doc about it. He had me examined and is expecting steroid-induced myopathy. Great! What happens from here? Is it permanent or can it be treated? Any input is more than welcome!

Loading...

You shouldnt worry-that much. I had similar problems when I was on Prednisnone. My sedentary kind of work and life even made things worse and more predisposed for this kind of steroid side effect. Us women are also more likely to experience the side effect. When I was diagnosed with myopathy, my doctor got me off the corticosteroids. He said the symptoms could improve right away or some time after. It took me a few months to be symptoms free. I suppose youll receive another treatment for your troubles with RA. Good luck!
Reply

Loading...

HELLO...

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
Reply

Loading...

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.

Reply

Loading...


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

Reply

Loading...


ps. My neurologist also recommended eating lots of high quality protein. He did not say how much. Hope your not a vegetarian.

Reply

Loading...


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.....

Reply

Loading...


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.

Reply

Loading...


Your story describes my current situation. Have you found any help yet?
Reply

Loading...

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!

Reply

Loading...

I was on and off prednisone for maybe 18 years for ulcerative colitis, resisting suggestions off an ileostomy. Finally had surgery,(successful), but then had a "PG" leg ulcer requiring additional prednisone for 4 months. i started with leg weakness, unable to rise up from a chair and go up or down stairs. Had tons of blood work, all normal. I just got a diagnosis from a physical therapy doctor called, I believe a "physiatrist". I am 81 and formerly very active even to point of doing Zumba. I thought that I was getting old and needed more exercise and that is not recommended as it may make it worse. I will soon see a physical therapist for stretching exercises. I will ask if chair yoga may help. Important for you to keep, asking, keep searching for answers and do not give up! Best of luck to you.
Reply

Loading...

I just sent reply to Chris Won and forgot to sign my name or email. Elisabeth....

***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Reply

Loading...

I have the same problem. I have an autoimmune disease called pv. I have been off steroids for 5 months. I went to a physical therapist. She suggested resistant exercises. I use those exercise machines that you find the park. i work my arms and legs with 12 reps very slowly. I am also starting to swim. I'm slowing seeing my muscle strength come back! Pls do not over do it! Take it slow over time! All the best! For a full recovery!
Reply

Loading...

After a craniotomy and gamma knife radiation for an Acoustic Neuroma brain tumor, I was put on steroids as rhe tumor was encroaching on my brain stem. It did its job and more...It gave me Diabetes and I was unable to walk at all for 6 months. I thought I would never walk again. Eventually I was weaned off steroids completely. Only then was I able to begin the work of rehabilitation. It took the next 6 months of physical therapy and chair yoga to get from the chair to the wheelchair to the walker and to the cane. Eight months in and I haven't used the cane in 2 weeks! I also began driving again. All in all I feel so lucky to feel this good. I do have lipodermatoschlerosis of the lower legs which causes pain and hampers smoothe strides. I have found much relief thru a vein clinic, as the huge fluid swelling damaged the blood flow in my lower legs. I also have found a fantastic cream for leg pain...ARNICARE. It is homeopathic and scent free. Compression socks are so helpful as well! They were awful to get on until I learned to wear surgucal gloves to pull them up. PT has ended for me but I participate in 2 chair yoga classes and 2 Stretch and Balance classes every week. I just found a chair tai chi dvd and plan to incorporate it as well one day a week as well as light hand weight exercises. Oh! And I am no longer diabetic! I wish us all well as we continue to deal with the results of steroid myopathy. Best wishes!
Reply

Loading...