Using methotrexate with PMR

Posted by smoshetti @smoshetti, Jan 7 5:46am

My husband, 72yo, was diagnosed with PMR in March of 2024. He had rather severe symptoms...couldn't get out of chair and pain in neck and shoulders and fatigue. He was prescribed prednisone and tapered to 1 mg over 3 months. At this point was pretty much symptom free. He has hypertrophic cardiomyopathy and saw his cardiologist who told him to stop any prednisone immediately and see a rheumatologist for alternate medication. Blood work for inflammation is elevated but not extreme. He is experiencing symptoms but not as limiting. Rheumatologist is prescribing him methotrexate 10 mg going to 15mg in 2 weeks. He's afraid to take this medication because of side effects yet wants to avoid getting GCA. Anyone have experience with methotrexate therapy for PMR?
Thank you!

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@rosemargaret

I'm being given Methotrexate to help get me of Prednisone. But both have bad side effects....which is the lesser of the two evils? The Prednisone does take away pain especially with an unexpected flare up. I don't think Methotrexate can do that. Any input or advice?

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People differ as to how these drugs affect them. Some classic problems with prednisone are high blood pressure, high blood sugar and bone loss. I have not had any of these issues with prednisone. Some classic problems with methotrexate are nausea and high liver enzymes. I got both of those. Kevzara can cause high cholesterol. I got that. I go over my labs online and follow the changes. I mentally assess how each drug is helping or not helping. It's a balancing act between costs and benefits and not a cookie-cutter thing. So far I have tried the drugs my doctor recommended and don't regret it, though I will soon be back to prednisone alone.

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@jenbillig

My rheumatologist refuses to use Methotrexate ? Wonder why? He never gave me an explanation ?

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Methotrexate has been around for decades and is relatively safe or doctors would not be prescribing it. The idea is to get off the steroids which have a multiplicity of issues long term. The Methotrexate is not meant (in so far as I understand) for long term. One needs monthly lab work to monitor liver functions tests in particular. Patients have rights. Your doctor should be explaining the reasoning behind not prescribing it for you. Perhaps you have a co-morbidity? But do get your doctor to explain. What will work for one person won’t necessarily work for someone else (as in the above post). It is about quality of life. Risk/benefit of any drug be it long term or short. I wish you well.

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@pattiobrien111

Methotrexate has been around for decades and is relatively safe or doctors would not be prescribing it. The idea is to get off the steroids which have a multiplicity of issues long term. The Methotrexate is not meant (in so far as I understand) for long term. One needs monthly lab work to monitor liver functions tests in particular. Patients have rights. Your doctor should be explaining the reasoning behind not prescribing it for you. Perhaps you have a co-morbidity? But do get your doctor to explain. What will work for one person won’t necessarily work for someone else (as in the above post). It is about quality of life. Risk/benefit of any drug be it long term or short. I wish you well.

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I will definitely insist on an explanation next visit because ACTEMRA hasn’t worked. I am back on 4mg of Prednisone but had a flair up last night and may have to go back to 10mg? N need to find an alternative

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@jenbillig

I will definitely insist on an explanation next visit because ACTEMRA hasn’t worked. I am back on 4mg of Prednisone but had a flair up last night and may have to go back to 10mg? N need to find an alternative

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Good for you! I’m sorry the ACTEMRA failed you. But don’t lose heart. What works for one person does not for another. It is your doctors responsibility and duty to investigate other treatments. Indeed, going back on prednisone (as I did) after coming off of it from a year of treatment was disappointing. However, I am on Hydroxychloroquine but not quite through the 3 month period where it should start to kick in. I am also trialing LDN (low dose Naltrexone) and am very optimistic about this. And yes, I can take all three with the idea of dropping the prednisone, Hydroxychloroquine and stay on the LDN for a while.
I have an excellent Rheumy and my GP pretty much lets me run my own show here. I’m a huge patient advocate being in the medical profession myself. People with maladies of sorts should be as informed about their condition as the doctors they see. This is easier done today with the advent of the internet an connections such as the Mayo Clinic.
Best to you.

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@pattiobrien111

Good for you! I’m sorry the ACTEMRA failed you. But don’t lose heart. What works for one person does not for another. It is your doctors responsibility and duty to investigate other treatments. Indeed, going back on prednisone (as I did) after coming off of it from a year of treatment was disappointing. However, I am on Hydroxychloroquine but not quite through the 3 month period where it should start to kick in. I am also trialing LDN (low dose Naltrexone) and am very optimistic about this. And yes, I can take all three with the idea of dropping the prednisone, Hydroxychloroquine and stay on the LDN for a while.
I have an excellent Rheumy and my GP pretty much lets me run my own show here. I’m a huge patient advocate being in the medical profession myself. People with maladies of sorts should be as informed about their condition as the doctors they see. This is easier done today with the advent of the internet an connections such as the Mayo Clinic.
Best to you.

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I just printed your reply and will take it to my Dr. I have been battling both my PMR and GCA. My PMR seems fine. I am 86 years old and very active. Only take one other medicine for my stomach and that’s all. My GCA however is a tough nut to crack. Have had it for 6 years with ups and downs. I am OK with 4mg of prednisone but it flares up each time. I can’t seem to get below it? Thanks for the info.

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@jenbillig

I just printed your reply and will take it to my Dr. I have been battling both my PMR and GCA. My PMR seems fine. I am 86 years old and very active. Only take one other medicine for my stomach and that’s all. My GCA however is a tough nut to crack. Have had it for 6 years with ups and downs. I am OK with 4mg of prednisone but it flares up each time. I can’t seem to get below it? Thanks for the info.

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Hi,
So you know, GC’s (prednisone) are the frontline treatment for GCA. MTX is a GC sparing agent as we know the long term side effects of using steroids. I believe there are some other drugs as well, but am not familiar. You would need to discuss this with your doctor. All medications have side effects and each of us are beholden to them in different ways. Some folks tolerate long term steroids with no significant issues an others do not. Patient education is critical in understanding this. Also are any co-morbidities you may have. This is between you and your doctor re: discussion. The thing with GCA is losing vision. So it’s important to stay on your current regimen of GC’s (aside from other issues that can stem from GCA). Bring a pad of paper an write everything down when you see your doctor. Also, have all the questions for him/her before your appointment.
I wish you the best.

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I seem to be one that is not affected NEGATIVELY by taking prednisone. No bone loss, my bone density tests are fine.Not gaining weight, sleeping OK etc..But everyone around me including my rheumatologist seem to think that it’s a really bad thing to take and to get off it ASAP? So that’s the conundrum.

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