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PMR and exercise: What helps you?

Polymyalgia Rheumatica (PMR) | Last Active: 12 hours ago | Replies (185)

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@suzorand

John, Yes I did have the moderna shot months ago and really had no reaction to it. I can't remember now if I was having pain at that time. I was taking leflunomide along with the Pred for months and my pain level was good. I had severe reactions to the drug though, so they put me on oral Methtroxate instead. That was about 4-5 months ago. I can't tell if it is working because as I taper from 5mg to 4mg my pain is getting worse each day. I am supposed to taper to 3 in a week and I don't see that happening. That is why I am questioning infusions. My doctors have told me in the past that they believe I may end up on them, I'm a very healthy, positive person and I ignored that, thinking I would heal quickly with a good attitude and taking the drugs as directed. Well, I guess I am finding the reality of what this condition really is and that it is not easy to get into remission. So, now I will have a serious discussion with my rheumatologist about the infusions. I haven gotten a response from anyone who has tried them on any of these support groups. It sure is nice though to connect with others who are suffering with the same condition rather than just doctors who have not. Thanks for being there!

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Replies to "John, Yes I did have the moderna shot months ago and really had no reaction to..."

Suzorand, your welcome.
FYI, I took twice as long to taper off Prednisone than what the docs said to do. I wanted to make sure PMR didn't come back. As for the other drugs... haven't heard of them. When I got my first vac shot, I was on nothing...just in terrible pain and going goofy....😳
With me, I do as much research as I can and figure out what I need to do for myself and that's how I came across the vac shot helping me. Maybe all the meds you are on are working against each other?
Google 'viruses versus Mexrothrate ' and so on with other meds and keep changing the wording around and mixing in PMR in there and scan read everything you can that may have a connection to the way you feel. Even with any supplements you may be taking. Lifestyle makes a difference sometimes too. Perseverence my friend. Plus it may give a little more hope. Canibis helps...☺️ It gets me to sleep... Good luck !

My rheumatologist recommended reducing in 1/4 MG increments after 4MG. It makes total sense when you think about the percentage dose when going from 5 to 4MG versus something like 20 to 15 mg. I recently got down to 4MG feeling pretty good but blew up when I went to 3 1/2MG.

She also put me on Celebrex so we’ll see how that goes! Methotrexate was an option but I didn’t like the potential side effects especially after loosing my hair when I was on Leflutamide! Yes it grew back, but I’m not going there again!