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Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and osteoarthritis, pretty severe according to x-rays. Knees are completely fused. I have been on IV therapy for auto immune disorders for 10 years and on prednisone for at least that long - different doses from 5 mg to 60mg depending on what’s wrong with me at the time. in the last five years the doctors have tried to wean me off - every time I got down to 5 mg I was in agony and in a walker or a wheelchair. The 10 mg kept me walking and traveling around the whole United States in a motorhome that I drove until suddenly this year in January I had trouble walking. I was in and out of four hospitals before I finally got MRIs taken and found out that the tendons in my legs are completely torn away from the bones, including the large hamstrings. I am now stuck with a walker and could be in a wheelchair within months and the doctors want me to go to a care facility and say I am unable to live independently. This is a known side effect of prednisone and is insidious until it is too late . So if you can try something else and if it works even halfway to what you expected the prednisone to do - go for it because otherwise, you may end up in a nursing home like I will.
Replies to "Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and..."
Hi @chochosana I would just like to say that I can understand how you feel. I rated my health as excellent when I was diagnosed with reactive arthritis with uveitis at the age of 32. My first dose of prednisone worked its magic back then.
I was told that I was positive for HLA-B27 which wasn't such a big deal when I was tested. It was just a random bit of genetic information that didn't mean too much at the time.
https://www.mountsinai.org/health-library/tests/hla-b27-antigenI'm now 68 years old and massive amounts of prednisone kept me going for about 35 years. Unfortunately, my medical problem list kept getting longer and longer during my years of taking prednisone. Premature cataract formation at the age of 35 was just a prelude for more things to come.
I might have done things differently knowing what I know now about prednisone. The pain was unrelenting sometimes and I didn't even know why things hurt so much. I don't know what was worse --- the autoimmune disease or the medication used to make the pain bearable.
I'm currently taking a biologic medication that my rheumatologist wanted me to try four years ago. It worked well for me and about a year later, I was off prednisone. My rheumatologist thinks I'm "better off" being on the biologic treatment as opposed to lifelong treatment with prednisone. I would agree with my rheumatologist's assessment because things appear to be heading in a better direction.
There has been a lot of damage done in the wake of this whole ordeal. I honestly don't know if the damage was caused by the autoimmune disease or the medication used to treat it. I tend to believe it was a combination of both.
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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?