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methotrexate or kevzara

Polymyalgia Rheumatica (PMR) | Last Active: Aug 28 6:49am | Replies (16)

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@andirae

Are these meds to be taken with or instead of prednisone?
Is there a suggested or required length of time?
How accurate are the side effect lists?

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Replies to "Are these meds to be taken with or instead of prednisone? Is there a suggested or..."

dadcue is better educated than me but side effects are really person to person. I have heard those that say they have no side effects from prednisone. I had high A1C, gastritis, High Cholesterol, high BP and weight gain in 6 months. Lots of people take statins. I can take them and have reactions in days. So its really how well your body tolerates it. With MTX is have seen high liver function tests from the comments. I dont think they know all the side effects from the Biologics yet. They are newer.

Unfortunately you can't simply stop taking prednisone. Methotrexate might help you get off Prednisone sooner if it works well for you. No guarantee methotrexate will work that well but for some people it works well. The research evidence that methotrexate works for PMR is mixed.

If you are a research nut like I am you might enjoy the following link. You are "newly diagnosed" so this fairly recent research is more pertinent to you than it was to me at the time I tried methotrexate. I think it is a study from The Netherlands.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9012047/
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My personal experience is the following:

I had mixed results when I took methotrexate for over a year. Methotrexate probably allowed me to take less Prednisone but I wasn't able to taper completely off Prednisone. My rheumatologist thought methotrexate was helping me. She wanted me to stay on methotrexate.

I didn't think there was any chance that methotrexate would have allowed me to taper off Prednisone. Methotrexate was making me ... let's just say nauseated. My rheumatologist didn't think my nausea was that bad but she wasn't the one who was retching every morning. She thought methotrexate might cause some nausea on the day I took my dose but not every day of the week. I called it "morning sickness" so maybe she didn't think I was being serious. I stopped methotrexate and refused to take it after a year or so.

My rheumatologist documented that methotrexate "wasn't tolerated" and didn't mention my liver enzymes were elevated. I remember going to my rheumatology appointment when I knew my liver enzymes were higher than they were at my prior visit. I thought my rheumatologist would want me to stop methotrexate but instead she wanted me to increase my methotrexate dose!
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I have never taken Kevzara so I have no experience with that biologic. I am taking a biologic called Actemra which probably works the same a Kevzara. My rheumatologist said Actemra was probably my best chance of ever getting off Prednisone since I had been on Prednisone every day for 12 years for PMR alone. I had many PMR relapses no matter how slowly I tapered my Prednisone. dose.

It wasn't like I didn't know how to taper off Prednisone because I did that successfully countless times for another autoimmune condition that was diagnosed 25 years before PMR was diagnosed. My ophthalmologist documented in his notes, "patient is skilled with prednisone tapers" before he handed me over to another eye specialist.

I knew how to taper off Prednisone but I was unable to taper off Prednisone after PMR was diagnosed. I was still on 10 mg of Prednisone after 12 years of PMR.

Actemra (tocilizumab) allowed me to taper off Prednisone in one year. I have been completely off Prednisone for more than 3 years. It is the first time in more than 25 years that I have gone longer than a year without any Prednisone.

I will be on Actemra for as long as it continues to work. In the UK, Actemra is restricted to one year if people are allowed to get Actemra for GCA. I don't think there are any biologics approved for PMR in the UK. The rest of Europe seems to get good results from biologics to treat both PMR and GCA but that is just based on what I read on the internet. I was told my experience with Actemra wasn't pertinent to people in the UK.

I wish there was more of an international presence on this forum. I want to hear about the experience people have from other countries. I know there are some people from other countries.