Prednisone myopothy- anyone have it?

I have been on steroids since 08 at varying doses- alot of 100g tapers and iv solumedrol with lengthy tapers. My thigh muscles are beat...walking with the kids up the steps today was like walking with 700lbs of weights on my legs. I am constantly tapering. I have gone through two rheumys, three neuros, two IM and have "well, its probably pred. myopothy" and "my chronic high dose pred patients do not fare well." Before my ITp in 08 I ran an entire high end jewelry store- morning til night. I dont want to give up. I'm 32. anyone have this and can give me advice?

I had really bad myopathy from the pred, my thigh muscles and neck muscles were the worst, while I tapered - it was finally gone about four months after I got off pred.

Not sure what advice. I think my potassium was low and taking prescription potassium might have helped a little. I think very light movement, you could hardly call it exercise, might have helped a little. It was pretty bad. I take the bus to work and I remember worrying that I wouldn't be able to stand up and walk when I got to my stop (I always managed though). I remember not being able to turn my head to check behind me while driving.
Erica

Is there any reason that you have been on prednisone for so long? Is it just for ITP? If so there are other treatments to try. What else have you tried?

There can be other reasons for muscle weakness. I've been on Prednisone for 7 years and have jello legs quite often. I discovered that my Vitamin D was really low and that has been causing extreme muscle loss. Prednisone can cause muscle weakness, but I've been told by a few doctors that if I had true myopathy, I wouldn't be able to get up from a chair. I can. Tapering will cause muscle weakness and the only way to circumvent that is by getting off of it and exercising - I know, the last thing you have energy for!

I'm telling you this to give you hope that it may be something else. As Erica said, low levels of potassium can also cause that. You might be able to fix it. I thought there was no hope for me but it seems to be getting better.

Really Sandi- exercising?!! That is truly the last thing i want to do. I tried whinro twice and it worked for a few months but she didnt want to use it again bc my rbc went down to 8. Maybe I need a new rheumy. They check my CK alot and it is normal limits to rule out like polymositis and other things. My vitamin D was 19 last year and I am taking one chewy calcium plus d since then. Havent had it checked since.

If you can sit in a chair and lift your leg a few times, that sort of 'exercise' - the pain was worst when I moved after being still, so I think moving around a little like that might help.
Erica

Believe me, I know it's hard. But if you read about muscle, you'll find that it goes fast but is hard to rebuild. The only way to do that is to exercise or you will not regain muscle. I know how hard it is; I am in the same boat. If you read some of my posts about Vitamin D, you'll see that I was losing my balance and falling over from having such weak legs. I've had physical therapy and didn't get anywhere because my insurance would only pay for 20 sessions and it ran out before I could even get to the point of exercising. I used to be able to bench press 200 pounds with my legs....years ago.

19 is very low for Vitamin D and I can bet you anything that is part of your problem. I've had 3 specialists tell me that low D can and will cause muscle loss and weakness. OTC's won't do it, you need a high dose script. I'm on my fourth script of 50,000 IU's a week. OTC's didn't raise my levels at all. There are some really in depth articles about D and muscle loss. Ideally, the level should be above 50, especially for someone on steroids.

this year am discovering i get neck ache whenever on pred. I am presuming it is an old symptom in my case of the meningitis. The ache goes away when they begin the tapering. It not all the time but most definately there and didn't have it pre meningitis days when on steroids. I only have it before tapering.

I don't have myopothy at all as far as I know. I can only sympathise with you as not had to give anything up or work around anything so can't offer any advice there apart from trying to keep going and eat little and often for energy. It may not last forever though it will seem like it. Can you hire/pay someone to help you out at work for this time or would that be too costly etc? Its an option to think about so you don't loose your business.

I feel for you and wish I could be of more help. Am in UK so can't even become a customer unless you are online:-} That be another avenue for you to think about by the way with your business. How much more work would it be going on line as a business and running the shop that way then you still keep your business and be at home on the harder days.

Whatheh: Have you or your doc considered lower doses of pred?

If you have access to a swimming pool, try a little weightless walking, or holding the edge of the pool while kicking your legs. Even just bouncing along with the help of a float could give some exercise while you are going through this. Hope it improves soon.
Norma