Methotrexate to wean off long term Prednisone for PMR

Posted by marymv @marymv, May 10 6:03pm

Hello everyone,
I have been on Prednisone for 3 yrs. Developed Cataracts and a weight gain of 15pds from it…so far. Can’t seem to stay below 7mg without a flair. Time to wean off Prednisone. Started on Methotrexate 4 days ago. The Rheumatologist sort of poo poo’d Kevzara. I have been researching and it seems one has to fail on Methotrexate before insurance will approve a biologic…cost I believe. So far I have had no problems but the serious side effects and lifestyle changes connected with Methotrexate ie possible hair loss and no more than 2 glasses of wine per week are down right depressing. Any thoughts? Thank you.

Best,
Mary

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I'm in a similar situation. I've been on prednisone for PMR since August 2021. I could not get below 8 mg prednisone so my doctor added 10 mg methotrexate August 2023. I had fairly severe nausea and headache for about a month but persisted. I dropped fairly easily to 5 mg prednisone. The side effects of methotrexate tapered off over time but liver enzymes have been elevated off and on. In January this year I had a bad flare-up and had to increase to 6.5 prednisone but was still not doing that well. I've gotten down to 6 mg but pain is increased. I often wake up between 1 and 3 AM in pain and can't get back to sleep. Now I will be going on Kevzara. It seems like it's a common story: can't get low enough on prednisone, methotrexate doesn't help over time, go on Kevzara. I can sympathize with the alcohol issue. I've been restricting myself to 6 beers a month due to being on the methotrexate. It's not fun to have to strictly limit something that does help pain and the stress of being in pain, even though temporary. Alcohol is not a health food but I'd like to up my consumption a little. Kevzara just masks symptoms but that will be an improvement over where I am now!

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I considered Methotrexate.
But when I mentioned to my rheumatologist that I had an surgery to be scheduled, she said I would not be able to be on Methotrexatefor a certain amount of time before or after and that there was a process itself involved in that.
If someone knows surgery is in there future, I believe that would be a consideration for Methotrexate.

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I have been on Methotrexate since November with no change in my PMR and still not able to wean down below 8mg. Doc wanted to put me on a newly FDA approved drug that I think started with a T, but cannot remember for sure. I am trying hydroxychloroquine instead for now. Newly approved sounds really costly!

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I'm not sure what drug your doctor is referring to but Kevzara is also known as sarilumab. Actemra is not specifically approved for PMR but is approved for the related disease giant cell arthritis. Its "other" name is tocilizumab. I will pass along what I have learned about cost for Kevzara. I have Medicare, a supplement and part D for drugs. My copay for Kevzara would be $300/month. I called the drug company and was told that people on Medicare do not qualify for a copay card but they have another program called patient assistance. I have applied and was told that that there is an income cap for that program. At first she told me that I could earn up to $100,000 but then she said 5 times the federal poverty level which would be around $75,000. I am waiting to hear if I will get help with the cost and how much. My doctor said that most of his patients on Kevzara are getting assistance with the co-pay.

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@chzuck

I have been on Methotrexate since November with no change in my PMR and still not able to wean down below 8mg. Doc wanted to put me on a newly FDA approved drug that I think started with a T, but cannot remember for sure. I am trying hydroxychloroquine instead for now. Newly approved sounds really costly!

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Hydroxychloroquine:
I was on it for over a year, it was expensive even with the insurance, .. and I got off of it because there was a warning of how it potentially affected vision ... And I perceived just on my own, that my vision was degrading a bit.
I didn't notice any difference without it.

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@linda7

I'm not sure what drug your doctor is referring to but Kevzara is also known as sarilumab. Actemra is not specifically approved for PMR but is approved for the related disease giant cell arthritis. Its "other" name is tocilizumab. I will pass along what I have learned about cost for Kevzara. I have Medicare, a supplement and part D for drugs. My copay for Kevzara would be $300/month. I called the drug company and was told that people on Medicare do not qualify for a copay card but they have another program called patient assistance. I have applied and was told that that there is an income cap for that program. At first she told me that I could earn up to $100,000 but then she said 5 times the federal poverty level which would be around $75,000. I am waiting to hear if I will get help with the cost and how much. My doctor said that most of his patients on Kevzara are getting assistance with the co-pay.

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Yes, Kevzara is the drug. I checked on cost, around $3k/month. I have been on prednisone since September 2020 at varying dosages, currently at 8 mg. I am seeing a Rheumatologist. I went on methotrexate in November 2023, but have not experienced any good from it. About two weeks ago I started hydroxychloroquine, but my doctor still wants me to continue taking eight 2.5mg methotrexate weekly. I do not know why, as it does nothing and has lots of risks. Maybe it is time t see another doctor?

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I am getting the Kevzara for free. I called Kevzara Connect at 844-538-9272. They are very friendly and helpful. I have only been on it 10 days and was told it takes 2 weeks to feel an effect. I can start tapering off the prednisone at 6 weeks. The best thing so far is that I was taken off the methotrexate and just take 6 mg prednisone. That drug had some bad side effects and wasn't helping, after initially allowing me to drop down on the prednisone from 8 mg. The shoulder pain that was my main PMR symptom is better and I feel pretty good during the day. Now I have pain in the fronts of my thighs, which started before the Kevzara, and wakes me up around 2 AM. I'm not sure what's going on with that and will have to see how the Kevzara will affect it.

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@linda7

I am getting the Kevzara for free. I called Kevzara Connect at 844-538-9272. They are very friendly and helpful. I have only been on it 10 days and was told it takes 2 weeks to feel an effect. I can start tapering off the prednisone at 6 weeks. The best thing so far is that I was taken off the methotrexate and just take 6 mg prednisone. That drug had some bad side effects and wasn't helping, after initially allowing me to drop down on the prednisone from 8 mg. The shoulder pain that was my main PMR symptom is better and I feel pretty good during the day. Now I have pain in the fronts of my thighs, which started before the Kevzara, and wakes me up around 2 AM. I'm not sure what's going on with that and will have to see how the Kevzara will affect it.

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While on Methotrexate and 7 mg of Prednisone, I would be awakened around 3am with pain in the front of both thighs and both shoulders. An increase to 8mg has seemed to take this away.

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@stevieb

Hydroxychloroquine:
I was on it for over a year, it was expensive even with the insurance, .. and I got off of it because there was a warning of how it potentially affected vision ... And I perceived just on my own, that my vision was degrading a bit.
I didn't notice any difference without it.

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One question I have, Is there a time frame for Methotrexate to work? I started it in November 2023, should I have seen results by now? In the beginning of the year I started weaning off Prednisone by 1 mg/month. I got down to 4mg and just could not function due to the pain. I went back to 7 mg/day, but that did not make me pain free during the day to comfortably do the things I wanted to do. Two weeks ago I went to 8 mg/day and started hydroxychloroquine. Currently I feel pretty good.

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@chzuck

One question I have, Is there a time frame for Methotrexate to work? I started it in November 2023, should I have seen results by now? In the beginning of the year I started weaning off Prednisone by 1 mg/month. I got down to 4mg and just could not function due to the pain. I went back to 7 mg/day, but that did not make me pain free during the day to comfortably do the things I wanted to do. Two weeks ago I went to 8 mg/day and started hydroxychloroquine. Currently I feel pretty good.

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I started using the Hydroxy chloroquine when I was at, I think 15 mg of Prednisone .... because I was having a hard time dropping even 1 mg without significant prolonged neogative effects. But I started taking a Chinese medicinal herb Practioner's custom mixed , daily "tonic" the same time. And I was able to wean down to 6 mg several times before being forced back to 7 or 8. But the duration and intensity of flares did diminish.
But I was warned to be careful to get my eyes checked while on it, and that degraded vision was one side effect.
So after over a year ( maybe two I can't remember) .... I asked my doctor if I had to wean down on the Hydroxy and I'd it was ok to try going off it to see what happens..... I did and felt no difference. (I continue to take the Chinese tonic). So for me specifically I'm guessing the Hydroxy helps initially acclimating the body to the weaning down.
But also, the cost was just ridiculous (for me)

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