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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: 21 hours ago | Replies (2025)Comment receiving replies
My first day off prednisone! Hope I never have to be on it again!!🙏🏻
Replies to "My first day off prednisone! Hope I never have to be on it again!!🙏🏻"
Let's hope so! I don't want to stop the celebration but the game isn't over just yet. Let's give it a few months and maybe a year before celebrating too much. It is okay to be happy with how things are currently going.
I remember when I was thrilled to be off prednisone for the first time in 12 years. I was probably too giddy. I was excited about the "leap of faith" I did when I stopped prednisone. The excitement was short-lived because within a couple of weeks something happened. I was utterly devastated when an ophthalmologist told me to take 60 mg of prednisone again. Actemra was working for PMR/GCA but my ophthalmologist said Actemra wasn't going to work for uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Fortunately it was only another 6 months until I tapered off Prednisone the second time. My ophthalmologist switched Actemra to Humira because it was supposed to be optimal treatment for uveitis. I had to be switched back to Actemra before I was able to taper off Prednisone the second time. My ophthalmologist is now saying that Actemra seems to work for my uveitis. These autoimmune disorders rarely respond in ways they are supposed to respond to treatment so cautious optimism is best.
For many autoimmune disorders ... treatment with long term Prednisone isn't optimal because prolonged corticosteroid use carries significant risks such as cataracts, glaucoma, and osteoporosis and other side effects that restrict long-term use. It seems like the memo wasn't sent for treating PMR/GCA. The belief that Prednisone is the "only option" for PMR/GCA is still entrenched.
https://www.mayoclinic.org/tests-procedures/cortisone-shots/in-depth/steroids/art-20045692
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@caroljeand Congratulations! I had some minor issues a couple of weeks after I stopped, but nothing too serious. I felt a little depressed and tired for a couple of weeks. A month after I stopped I noticed that my metabolism was back to normal. I could eat more and burn it off. I felt like the prednisone was completely out of my system after about 4 months. But maybe you will recover faster than that.