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What justifies an increase in prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 8 6:17am | Replies (45)Comment receiving replies
Frustration again!!
Rheumatologist finally got back to me after I sent a second message today. She seemed put out and offended that I was taking up her valuable time to see patients.
I tried to plan ahead to get the things I wanted to say on paper. Didn’t get to it all because she flustered me so by her attitude and telling me I don’t listen. (I’m sorry, but she doesn’t listen to me. )
I did get to ask about the increase from 5mg to 10mg since I was having low pain levels. Her response, “ You are still complaining about some shoulder pain in the morning still. You should not be having any. Want to get the pain managed and then put you on the other med to get you off prednisone and control pain. “
She keeps pushing methotrexate and kevzara.
Also my inflammation markers staying normal and low didn’t seem to matter.
She also suggested I get another opinion. (Mean get another dr?)
I don’t think at this point I’m ready for those other meds. I’ve been working at this since February with 20mg and started 5mg a week ago. I’m frustrated and mad at myself for not clearly stating that. I’m not sure what the normal time schedule it is for using other meds over prednisone.
So I feel a little lost. Not sure whether to follow her recommendation to jump to 10mg or hold the present course?
I did call my pcp to see about getting referred to another dr. Who knows how long that will take? In the meantime…?
Replies to "Frustration again!! Rheumatologist finally got back to me after I sent a second message today. She..."
I have successfully tapered to 3.5 without incident, but not without pain…exactly as was promised by my rheumy. My hand pain and finger pain and weakness have largely disappeared. I do have almost daily pain (level 1 or 2) in ONE shoulder, which is largely gone by the afternoon. That shoulder had a prior rotator cuff tear. My markers are normal.
There is no way I would jump up to a higher dose. Best to you.
My doctor suggested methotextrate when I was at 20 mgs of prednisone in my 3rd month total. I was scared to take this metho drug and now I’m in my 9 month now at 19 mgs and can’t go lower. I have in and in my 5th week with the methotextrate. No help yet but I think my body is addicted to the steroids and gonna be difficult to wean off now than my 3rd moth. He might have been right. Good luck in your decision
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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!