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PMR or Steroid Myopathy

Polymyalgia Rheumatica (PMR) | Last Active: Feb 2, 2023 | Replies (30)

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@johnbishop

Hello @chochosana, Welcome to Connect. Thank you for sharing your story on long term prednisone use. I'm not sure @rachelp will see your reply since she last posted in 2020. I'm sorry to hear you are now stuck with a walker and the potential of being in a wheelchair soon. My mother struggled with rheumatoid arthritis along with other conditions which left her in a similar situation but she was able to stay with my sister. It is a difficult situation to say the least and being your own advocate by learning more about treatments and options are what is needed.

Do you have any family close that can help you live independently?

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Replies to "Hello @chochosana, Welcome to Connect. Thank you for sharing your story on long term prednisone use...."

Thank you John for your reply. I do have some assistance but I’m going to move next to them and get home health and try and stay somewhat independent. I’ll have a ramp built and I hopefully be able to stay on my own for a while longer. I was an RN for 20 years and so I do my research and will get into physical therapy once I get settled. I had to move a few hundred miles away and then go from hotel to apartment etc. until I can get my place fixed and change medical insurance and all my doctors etc. so there’s been a couple of months where I had to move around and my daughters been a big hel. if anybody has suggestions as to what I should do besides physical therapy that would be a big help. I have to see an endocrinologist as my adrenal gland, has shut down, so that’s going to be a few years of tapering off my prednisone , I’m still on 5 mg daily. O I will probably continue deteriorating at the same rate. I just found this website and I didn’t even know how to use it, so thank you for your suggestion about timeline.