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What justifies an increase in prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 8 6:17am | Replies (45)Comment receiving replies
I give your rheumatologist credit for wanting to "manage your pain." She isn't wrong for wanting to do that. I think it is more of an issue of having "no pain" versus "tolerable pain."
I'm more of a person who thinks "tolerable pain" is acceptable. There was once a time when I had no pain but that isn't my reality anymore. I think having "no pain" is unrealistic. However, when"no pain" was more of my norm then any pain at all was unacceptable to me.
As for being treated with methotrexate and/or Kevzara versus staying on Prednisone. Most of that is a personal choice that you alone must ultimately make. My rheumatologist always gave me the choice of trying another medication. There was a time when Prednisone didn't seem like such a bad choice. That too changed with time.
I don't have any experience with Kevzara but I have taken Actemra for 5 years to treat PMR. When Actemra was first offered to me I had already taken Prednisone daily for 12 years. I had doubts about ever getting off Prednisone. I read comments about Prednisone being better because it was the "devil I knew" versus another devil I didn't know. There were also comments about Prednisone being the "only option" for PMR. It was my choice to try the unknown but my rheumatologist recommended trying Actemra.
FYI ... methotrexate was another devil for me. That one didn't work for me but it might for you.
In my case, Actemra wasn't a devil at all. It has been a much better option for me compared to Prednisone. Your mileage with Kevzara might be different.
My rheumatologist said in response to prednisone being the "devil I know" and the "only option" comments was different. My rheumatologist said, "It was my choice but I wouldn't know unless I tried Actemra to see if it works or not."
I have now had a remarkable run of more than 3 years of being off prednisone. I never want to go back on prednisone again!
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I also should mention my functional dietary nutritionist feels she can help get a handle on this instead of a biologic. As she says”drs are trying to control symptoms and not looking for the root cause. That’s my realm. “
I am not sure of any timetable for any of this whether biologic or other means.
Being that you dealt with PMR for a longer period, is it debilitating over time or a nuisance(?) to deal with?
And as always, I’m looking for knowledge and answers since I know no one personally who has this condition or even heard of it. This forum has given me comfort and a less feeling of isolation in this journey.
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I’m just so torn at jumping back to 10mg per dr and continue my tapering.
I’ve gotten down to 5mg starting July 28 and have managed with the pain. It’s not over a 2 yet but it will probably take longer to adjust than other dosages but it’s an unknown. Going back to 10 means my tapering goes longer. (At least that’s my presumption.)
What was the turning point that made you use a biologic?
I really can’t say I’ve had a flare unless that means some discomfort as tapering steps go. I have never returned to the original pain levels pre steroid.
I find it interesting that the pain locations somewhat change at each level. Used to really only be the upper arms toward shoulder but now I get some neck and lower back at times. Even my forearm and thing tingling decreased after starting during 6mg taper but has started up more when I started 5mg.
What a journey! I know mine has been short compared to yours. I’m glad things have worked out for you and that you share willingly.