View Full Version : Steroid Induced Myopathy after 25 years of prednisone...

12-06-2011, 02:21 PM
Hi there, am I glad I found this place!! I have had SLE since 1986 and have coped pretty well so far. I am told I have a great outlook on life and now I need help!! I have had heart involvement (pericarditis), lung involvement (pleuritis), blood involvement (thrombocytopenia), brain lesions, stroke, lupus vasculitis in my legs caused me to lose 2 toes to gangrene, and the usual aches and pains that we all have. I have been on Prednisone non stop for 25 years with the dose increasing and decreasing all the time. I am married, own a small business with my husband and do okay most of the time. In the last couple of years I have been having increasing leg pains which I and my Family Doctor thought was just plain old back problems. After multiple MRI's, she decided I was a candidate for back surgery. Today was the long awaited appointment with the Neurosurgeon. I was so excited! I thought, now I will have the surgery and I will be back to normal (or as normal as I can be!). He called me into my office and had a strange look on his face, he had gone over my chart, tests, all my MRI's and said, "I unfortunately can't help you"... I was stunned, I thought he didn't like me or something!! He then went on to tell me that I don't have back problems at all but I have "Steroid Induced Myopathy". He explained that my muscles in my legs were slowly dying from all the steroids. There is no reversing it and the only way to curb its progression is to stop the prednisone which is not an option. As it is, I can only walk for about 5 minutes before I have to sit down. He said I will probably be wheelchair bound soon. I can't believe this is happening!!! I have gotten through all sorts of obstacles that lupus has caused and now I think it finally got me. My husband is so supportive. I need to know if anyone else is coping with this, I can't find much more information than a definition on the internet. Thanks for reading and I look forward to learning more here!!

12-06-2011, 07:29 PM
hi marbie,
i am glad you found this place also.

i must congratulate you on your outlook.

it is a rare ability to stay so positive.

i am sorry that you have gone through so much.
but i am glad you have now found friends who understand.

i like to call this place my cyber family.
now you are here, you are a family member, and many of us will bring you into our daily lives.

again welcome.

12-06-2011, 10:12 PM
Hello and welcome to our family. I am sorry to hear that you've struggled so much with this disease. Please know that you are amongst many who understand, who care, and who want only to help you in any way that we can. Again...welcome.

Peace and Blessings

12-06-2011, 10:23 PM
welcome whl sorry you are having so much trouble but we are here to help as much as we can.

12-07-2011, 04:41 AM
Hi Marbie,

Welcome to WHL.
I am sorry, you have to deal with this new diagnosis. I have never heard of it either, wish I could help you.
We do have alot of members, from all over the world, maybe somebody has some advise for you.
Just know, that we are here for you, if you need to talk.
You have one great thing on you side, your awesome husband. I know how important a great husband is, I couldn't handle all this Lupus business, without mine.


12-07-2011, 11:35 PM
Hi Marbie,
I'm not experiencing the same thing that you are, but something similar.
I haven't taken steroids, since I have Avascular Necrosis, so I can't take them.
However, I am having severe problems with the muscles in my legs. The calf muscles, and to some extent the hamstrings, are tight, spasming and hyper-toned. It feels like my legs are in a constant cramp. One doc has suggested that it might be spastic paraplegia.
If he's right, I will probably end up wheelchair bound, too.
I hope that you can get some answers. I suggest that you ask your doc for a prescription for physical therapy. Going to PT a couple of times per week has helped me a lot to keep the muscles moving and to learn how to stretch them.
Good luck, and keep in touch.