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Polymyalgia Rheumatica (PMR) | Last Active: Mar 10 7:18am | Replies (8)
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@dougrout
I think the vascular surgeon is right. After starting Prednisone it is hard to interpret anything that could lead to a definitive diagnosis. It is even difficult to know if you have an infection or some other medical condition.
The problem with Prednisone is that it isn't a "targeted treatment" and it is prone to have systemic side effects. Prednisone is a powerful immunosuppressant and anti-inflammatory medication that significantly complicates medical diagnostics by masking symptoms and altering lab results.
Your description of your symptoms sounds consistent with GCA and sounds exactly like what people experience with Prednisone. Being on 60 mg is a lot of Prednisone. I'm not a fan of Prednisone anymore because it only controls inflammation for 24 hours or less. That means you have to take it every day or else the inflammation returns every day. Some people say the pain and inflammatory substances return in the middle of the night. That only means the inflammation isn't controlled during the night.
In the short term -- Prednisone is great. The longer you take it ... the worse the side effects get. I would encourage you to have a discussion with your rheumatologist about trying a biologic or even Rinvoq. There are some FDA approved alternatives to Prednisone these days. Nobody should be encouraging other people to continue taking Prednisone on a long term basis meaning years-- let alone for the rest of their life.
I think John Hopkins Vasculitis Center is a reliable source of information.
https://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/
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This Mayo Clinic forum is fantastic for learning about the experiences that other people have who are on Prednisone. Also, many people here are being treated with alternatives to Prednisone.