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PMR and possible GCA - unable to take oral steroids - alternatives?
Polymyalgia Rheumatica (PMR) | Last Active: Feb 22 3:16pm | Replies (7)Comment receiving replies
@dadcue
Thank you for sharing your history. It’s reassuring to hear that it’s manage. My wife has an appt. This week with her rheumatologist and we will discuss this info.
My wife did not take the methotrexate as she read it really wasn’t helpful for PMR or GCA
She will tell her doctor this week.
The PMR symptoms have subsided
With the one injection of triamcinolone acetonide that the MD gave on Feb. 4th. Because she can’t take the prednisone by mouth and she was miserable with pain, but MD prescribed methotrexate
Has anyone spoke to you about methotrexate being useful?
she thinks she feels subtle signs of GCA, so she will ask for a scan or whatever test to check for that.
My wife is wondering if it’s possible that she had this one time debilitating flare of PMR and maybe never again. One could hope.
You’re very kind to take the time to share your information
I’m feeling good that it can be managed and I hope wife will get the treatment and testing needed for the GCA.
Thank you again
Replies to "@dadcue Thank you for sharing your history. It’s reassuring to hear that it’s manage. My wife..."
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@boogieman61
"My wife did not take the methotrexate as she read it really wasn’t helpful for PMR or GCA."
and
"Has anyone spoke to you about methotrexate being useful?"
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Be careful about coming to conclusions based on what other people say about some medications.
I was on methotrexate for more than a year before I stopped taking it. It was my choice and my rheumatologist wasn't too happy about me refusing to take it. She seemed to think it was working well for me.
My rheumatologist wanted to increase my methotrexate dose when I was telling her it was making me sick. When I stopped methotrexate, my rheumatologist wanted me to restart it because she could give me something to prevent nausea except it was more than nausea. I gave methotrexate a second chance but I was retching before I was able to swallow it. I think I had an aversion to oral methotrexate. My rheumatologist said it might be better if I took methotrexate by injection.
I never tried the injection however it is very common to develop an aversion to oral methotrexate (MTX) due to nausea, leading to anticipatory retching, where the body reacts before even swallowing the pill. Switching to an injection is a well-regarded strategy to overcome this.
I think methotrexate is one of those medications where it works for some people and doesn't work for others. I took it a long time and it was probably working except for the "nausea."
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I was glad I took methotrexate. When the authorization request for Actemra (tocilizumab) was submitted it stated that "every other treatment option including methotrexate had failed" and Actemra represented my "best hope" of ever getting off prednisone.
My rheumatolgist didn't "guarantee" Actemra would work. He said I wouldn't know if Actemra worked or not unless I tried to see. At the time, in 2019, certain people weren't very supportive of me receiving Actemra for PMR. They said prednisone was the "only option" and I should take prednisone for the rest of my life.