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Replies to "Hi, I was just diagnosed with PMR about two weeks ago. I’ve just started on a..."
I think its great that you concerned about long term use. Most are just glad to be feeling alive again after starting prednisone. Usually our diagnosis took some time to figure out and feeling better on prednisone is a blessing. I was on 10mg equiv. for 5 months. Then started to taper. I was off prednisone in 6 months. My PMR was controlled and I did not have any other ailments that popped up. dadcue is a miracle. He was faced with so many demons to fight that he became a demon slayer. I agree with his advice. If you can treat PMR and prednisone as in a relatively short amount of time say less than 2 years then you can save yourself from additional medications. They all have some effect. Nothing like prednisone. Prednisone side effects may last a lifetime. (statiscally speaking). Educate yourself as much as possible and realize you can control the outcome.
Was diagnosed in July 2024 with PMR and possible GCA. Started on 60 mg of prednisone daily. Couldn't taper below 8-10 mg without a flare and increased joint aches.
I have read other's PMR journey on this site. Many have been on prednisone for years. Prednisone has already caused me other issues- mainly diabetes. Haven't had my bone density checked since I started on prednisone, but I wouldn't be surprised if it were compromised.
I will have my second actemra infusion this Wednesday. I'll get them every 4 weeks. I'm down to 11 mg. a day. I already feel better. More energy and not the general feeling of malaise. I am hopeful that it will help me taper to 0 mg. I was very active before PMR. I'm getting my life back. Good luck!
I don't know the answer. I do wish that a biologic was tried much sooner in my case. I was treated with prednisone for 12 years before a biologic was tried. I can only say my treatment with Prednisone in the short term didn't cause too many problems. My long term use and cumulative dose of prednisone over time was what did most of the damage.
By comparison, I wasn't able to taper down to 10 mg of Prednisone during my first 10 years of treatment. I was in the 20-40 mg range during most of that time. A biologic was tried when I couldn't tolerate anything less than 10 mg after 12 years.
I don't think you need to worry too much about 10 mg or less for the first year or two. It just depends on how things progress. Don't be frightened of prednisone and PMR. Just be aware of potential problems that can arise the longer you need prednisone. A biologic comes with potential problems too.