1. < Polymyalgia Rheumatica (PMR)

Experience with Methotrexate?

Posted by abbeyc @abbeyc, Feb 14, 2022

Hello, I have been on 20 mg of Prednisone for about 2 months and at my next Rheumatologist check-up this week, my doctor is going to talk to me about the option to add Methotrexate on top of the Prednisone. Has anyone tried this? Any success? Any advise? Seems like another strong drug to have to worry about the side effects. Wondering if it's worth it.

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vandyms1974 | @vandyms1974 | Dec 6, 2022
In reply to @chefj "I had issues with lightheadedness while on methotrexate. Saw every specialist they could think of since..." + (show)
@chefj

I had issues with lightheadedness while on methotrexate. Saw every specialist they could think of since that is not a side effect of the drug. All their tests were negative. We finally decided to discontinue the drug and I feel so much better. However, the methotrexate did get my inflammation markers to be normal for the first time in years. Getting labs next week and hoping my numbers are still down. Still on a low dose of prednisone, slowly tapering down.
Hope you get some answers and feel better.

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I agree with the above. When my rheumatologist tried methotrexate on me, he prescribed Folic Acid along with it. I could not tolerate methotrexate well as it cause pain in my right side. Liver? We just chose to get off it.

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marieirene | @marieirene | Dec 11, 2022

I was on 6 tabs of methotrexate once a week but rhumy increased to 8. My inflammation markers are almost normal now! It’s a start.
I also read on the Mayo web sites here you should not take folic on the same day as methotrexate. I omitted it last Wednesday. No head balance issues. Horray

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1 reply
victoriabirdie | @victoriabirdie | Jan 22, 2023

After 6 weeks of pain and suffering and 6 medical professionals, I was diagnosed with Temporal Arteritis. I’m on 60mg of prednisone/daily but still having pain. It attacked the arteries in my face, head and tongue. I’m curious if others afflicted have used methotrexate and was it beneficial? Just learning about this monster and want to know all I can

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 22, 2023
In reply to @victoriabirdie "After 6 weeks of pain and suffering and 6 medical professionals, I was diagnosed with Temporal..." + (show)
@victoriabirdie

After 6 weeks of pain and suffering and 6 medical professionals, I was diagnosed with Temporal Arteritis. I’m on 60mg of prednisone/daily but still having pain. It attacked the arteries in my face, head and tongue. I’m curious if others afflicted have used methotrexate and was it beneficial? Just learning about this monster and want to know all I can

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Welcome @victoriabirdie, You will notice that we moved your post to an existing discussion on the same topic so that you can connect with @marieirene, vandyms1974, @chefj and others who have posted about Methotrexate. If you click the link below it will take you to the top of the discussion where you can read through the posts.

--- Experience with Methotrexate?:
https://connect.mayoclinic.org/discussion/experience-with-methotrexate/
Have you told your doctor you are still having pain at 60mg prednisone?

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1 reply
julesonthebeach | @julesonthebeach | Jan 22, 2023
In reply to @abbeyc "Thank you so much for sharing. Other than needing the folic acid, were you told of..." + (show)
@abbeyc

Thank you so much for sharing. Other than needing the folic acid, were you told of any negative side effects from Methotrexate, like hair loss? I'm worried that this is a chemo drug. I will find out more tomorrow when I see my RA doctor.

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I read only 10% of people taking methotrexate have hair loss.
I took my first injection of methotrexate on Friday. So far I'm doing well. I look forward to being more functional in the near future. Right now I shuffle around like I have Parkinson's. I'm only sixty years old. I became sick with PMR when I was recovering from a case of Covid-19.

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victoriabirdie | @victoriabirdie | Jan 24, 2023
In reply to @johnbishop "Welcome @victoriabirdie, You will notice that we moved your post to an existing discussion on the..." + (show)
@johnbishop

Welcome @victoriabirdie, You will notice that we moved your post to an existing discussion on the same topic so that you can connect with @marieirene, vandyms1974, @chefj and others who have posted about Methotrexate. If you click the link below it will take you to the top of the discussion where you can read through the posts.

--- Experience with Methotrexate?:
https://connect.mayoclinic.org/discussion/experience-with-methotrexate/
Have you told your doctor you are still having pain at 60mg prednisone?

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Yesterday. He is bumping me up to 80mg of prednisone for 5 days, running more tests and looking at other options. I know he was concerned to put me on that much at my weight. 134

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chickpea44 | @chickpea44 | Jan 25, 2023
In reply to @tillysam "I would recommend you try the Methotrexate. I did not do well on it but if..." + (show)
@tillysam

I would recommend you try the Methotrexate. I did not do well on it but if I had done well I might be off of the steroids. Take a chance.

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I started on 10 mg of MTX with trepidation last October ‘22 as was having protracted flare and asthenia. The pharmacist who dispensed it said MTX had been miracle drug for some. I took it that evening and the following day felt completely different! Within 3 days most of the pain and inflammation had been wiped out. I was on 15 mg of Pred and am slow tapering to 14 mg. Rheumy wants me to up it to 15 mg of MTX - I’ve been on 10 mg for 12 weeks now & thinking of raising it to 15 mg of MTX tomorrow. It’s working for me… good luck whatever you decide. BW. xx

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chickpea44 | @chickpea44 | Jan 30, 2023
In reply to @wv54 "The only thing I was told - if I didn't take the Folic - I would..." + (show)
@wv54

The only thing I was told - if I didn't take the Folic - I would know by the side effects ---- that was it -- no hair loss ----- yet

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Been on MTX 10 mg for 12 weeks and upped to 15 mg last week. Folic Acid 5 mg x 6 days. Feel great and no hair loss due to folic acid.

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rashida | @rashida | Jan 30, 2023
In reply to @abbeyc "Thank you for that information. This makes me feel better about trying it. Those of us..." + (show)
@abbeyc

Thank you for that information. This makes me feel better about trying it. Those of us with PMR are put on Prednisone to control the pain and symptoms. and then we slowly work our way down to low or no dosages of Prednisone. None of us want to be on steroids. My doctor says Methotrexate is a way to potentially get off the steroids faster. I will learn more tomorrow.

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@abbeyc While you are on Methotrexate (and possibly Prednisone too), your doctor should be ordering blood tests every three months regularly. I also had a liver biopsy (non invasive, something like an ultrasound but a scan of the liver) every couple of years. This was regardless of my fatty liver disease.

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rashida | @rashida | Jan 31, 2023
In reply to @douglow "I was diagnosed with PMR in Jan 2022; started on 20 mg, and went on a..." + (show)
@douglow

I was diagnosed with PMR in Jan 2022; started on 20 mg, and went on a taper of 2.5 mg a month until 10 mg, then 1 mg a month. I had a flare around 10 mg, moved back up to 11 for a few weeks and things quieted down, then got to 5-6 mg before another flare which presented mostly in my hands (which had not been previously affected). I had trouble bending my fingers and making a fist, along with a return of mild bi-lateral shoulder pain (though so hard to separate it from partial rotator cuff tears predating the PMR diagnosis. I was moved back up to 10 mg and started a new taper schedule going down by 1mg every two weeks but at 9 mg the hand issues returned. Now my rheumatologist is suggesting that I consider going on Methotrexate and I am concerned whether this is indicated at this point in the treatment.

Is anyone on Methotrexate? Once you are on it do you stay on it indefiniely or is it tapered off ideally as well?

Are the side effects of Methotrexate worse than long -term Prednisone?

Is it premature to consider getting more aggressive; put another way, is there any clear protocol on when moving to this drug is indicated?

I read that many on this forum have been tapering for well over a year and I am only 9 months in so wondering whether I just need to be patient?

Thanks to all who can shed light on this.

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@douglow if you need to get off Methotrexate, you do have to taper off the Methotrexate tablets every week till you have no more doses to take. I went from 8x2.5mg to 6x2.5 to 4x2.5mg. etc. till I went down to zero.

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