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I keep relapsing when I try to get off prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jul 11 12:42pm | Replies (82)Comment receiving replies
I just saw these webinars on the PMRGCAUK website and thought they might be helpful.
-- Improving outcomes through exercise and activity by Will Gregory, Consultant Physiotherapist and Clinical Lead of Rheumatology at Salford Royal Hospital and BSR Vice President
-- A bit of both? Hidden complexities in PMR and GCA - Dr Sarah Mackie
https://pmrgca.org.uk/pmrgcauk-week-webinars/
There is also a resources page on the site that has a tapering plan application page that looks like it could be quite useful if you are struggling to get off of prednisone. You might need to register but they don't track any personal information other than email address.
-- PMRGCAUK Resources library: https://pmrgca.org.uk/information-and-advice/resources/
-- Steroid tapering application: https://steroidtaper.azurewebsites.net/
Replies to "I just saw these webinars on the PMRGCAUK website and thought they might be helpful. --..."
The Dr Sarah Mackie webinar was interesting. I liked her comment about "doctors don't treat themselves" implying that patients shouldn't either. She easily admitted when she didn't know some things which is a good trait for a doctor to have.
I didn't self medicate with prednisone that much after PMR was diagnosed. I certainly self medicated before PMR for other autoimmune conditions. I had so many things that happened to me before PMR it was no wonder I developed PMR. I am so grateful for the advice I received from my rheumatologist after PMR was diagnosed,
Access to medical care is a problem. With the internet there are too many people who declare themselves experts and they fill the void with their medical advice. The Mayo connect forum is extremely good. People giving medical advice doesn't seem to happen too much. Sharing one's personal experience is one thing. Giving medical advice is something else. I think people will have better luck listening to their doctors.
If there is one takeaway from my 12 years with PMR --- I learned how much I didn't know.
Relapsing no matter how a person tapers prednisone is a real problem. There is no single way to taper prednisone that works for everyone. There are too many variables from one person to the next person. You just need to keep trying until something clicks.
I think exercise is key. You have to push through some pain.
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Thank you! I will check this out.