Dexamethasone & Muscle Myopathy

And, if, you are experiencing drug induced myopathy/leg weaknesses from dexamethasone, Hydrocortizone and/or prednisone, what did you do to remedy?

Hello @cmmone1 and welcome to Mayo Clinic Connect. Often times the trade offs for medications to treat one thing can result in side effects such as this, sadly.

I found member @glendal who joined some time ago and had mentioned drug induced myopathy so hoping they may come back to join you for an update and some needed support.

What instructions have you been given on how best to deal with your myopathy and what have you tried so far, if anything?

Thank you Amanda for your reply.
We been doing physical therapy and we have tried Hydrocortizone & presdisone with some other side effects.
Still searching for something that may counter the drug induced myopathy from Dexamethasone.
Thanks again

Hi @glendal, I heard from @amandajro that you may have some insight for drug induced myopathy and if do please share. Thank you

I am experiencing prednisone induced myopathy. I was on it for more than 10 years and 10 mg plus when I had episodes of information that we could use nothing else for I was allergic to NSAIDs and pain pills when I look back I can see when it started and how it’s almost exactly like the medical articles explain. The only thing I’ve been able to do for it is to adjust to being a paraplegic because both my knees are bone on bone and I can’t have surgery so between the knees and the fact that my Hamstrings have come off of the bone completely with many of the smaller tendons I don’t expect I’ll be able to walk much longer. I am currently using a walker. I can’t do a dose of prednisone because I’m still on 5 mg. I too have no adrenal function, so I’m going to an endocrinologist as soon as I can. Because of my age and my other comorbidities, I won’t be having any surgery and I don’t suspect there’s anything else that can be done, I’ve done a lot of reading. I used to be a nurse, and I can’t figure out anything else other than adjusting to it. Not good, huh?

Not sure if my experience is applicable but thought I would share. I had Cushing's Disease and had a tumor removed from my pituitary gland. It took several months for my adrenal glands to kick in and begin producing cortisol again. During that time I took hydrocortisone. My legs were very weak - I had to have assistance to step up on a curb. I went to physical therapy for over a year and built back my strength. I never attributed it to the medication though; I think I was weak even before then. And I was fortunate that my adrenal glands began working again.

Hi Chochosana,
Thank you for sharing. 18 months ago, I had a tumor removed from my pituitary gland, which cause my adrenal gland not to produce cortisone. So, we are on Dexamethosone 1.0mg per day for cortisone replacement and are experiencing similar problems like you, e.g. a drug induced myopathy, where my legs are weaken and feel jello like. From my readings, all of these corticosteroids (Hydrocortizone, Prednisone & Dexamethosone) have this side effect (muscle myopathy), but Dexamethosone, which is fluorinated seems to have higher cases versus non-fluorinated like Hydrocortisone & Prednisone.
Like you we are posting, but have not found a path forward with our current endocrinologist. We are planning to change.

Hi Drs 22,
Thank you for sharing. Happy to hear your positive and successful recovery.
Our cases is very similar to yours, eg pituitary gland tumor remove, adrenal gland not producing cortisol and muscle weakness or myopathy. We are on Dexamethosone 1mg daily, but do not know if my adrenal gland will start producing cortisol again as it’s been 18 months.

Hi commone1. I have not been to an endocrinologist yet can’t get in, but I have done a lot of reading as I said, and they all treat the non-functioning adrenal gland, the same way with a little bit of a different corticosteroid and that’s all as far as I can tell. I talked to my rheumatologist today and she said since I can’t have surgery and have so many other problems, there’s nothing that can be done, except maybe a little bit of physical therapy to help me get some muscles that aren’t damaged stronger. I’m sure you’re much younger than I am. I’m glad you got the tumor out that I’m sorry that you’ve had this result. I am now 78 and I do not want to live like this. This is horrible, so good luck to you and if you find anything, give it a post.