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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@chickpea44

WOW that’s wonderful! I believe males are are stronger at overcoming PMR than women! What was your PMR history? Did MTX help you into remission with steroids and how long did your illness last? Would love to hear!

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I've never had to use methotrexate. Prednisone was my magic pill for both occurrences of PMR. The first occurrence in 2007 lasted 3 and 1/2 years with the last six months going back and forth between 1mg and 1/2mg prednisone until I could finally stop taking it without having any pain the next day. I stayed in remission for about 6 years and the PMR came back in 2016. Started back up with 20mg prednisone and was able to taper off in a year and half. I had better luck the second time around I think mostly because I made some lifestyle changes - better eating habits and more exercise.

-- Polymyalgia Rheumatica Diet: Do's and Don'ts - Healthline:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

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I was having trouble tapering below 10 mg prednisone/day...several months (~6 mos.) ago my Rheumy put me on methotrexate and folic acid - so far, I've been able to taper the prednisone to 5mg/day (for a week now) without much downside...a little more stiffness in the AM but resuming acetaminophen and ibuprofen at night is helping especially with number of hours at sleep.

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My son-in-law has 4th stage liver disease from methotrexate used to treat rheumatoid arthritis. The rheumatologist was not monitoring him at all. Makes me afraid to try it although it should be safe with proper monitoring.

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This brings up an issue that I have noticed with my rheumatologist: he does very little monitoring for drug side effects ( prednisone in my case). I took the initiative to get my eyes checked for glaucoma and cataracts. I take my blood pressure and have a kit to measure my blood sugar. I feel my pulse occasionally to see if there are irregularities. I had to request a DEXA scan from him to see how my bones are holding up. I went to my primary to have blood work done. I would think that these things would be standard to see how a person is tolerating the prednisone, especially since I've been on it 15 months and have only gotten down to 7.5 mg. I least I would expect him to remind me of what to have checked and watch for. It's another reminder of how much the patient has to do if they want a good outcome.

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@linda7

This brings up an issue that I have noticed with my rheumatologist: he does very little monitoring for drug side effects ( prednisone in my case). I took the initiative to get my eyes checked for glaucoma and cataracts. I take my blood pressure and have a kit to measure my blood sugar. I feel my pulse occasionally to see if there are irregularities. I had to request a DEXA scan from him to see how my bones are holding up. I went to my primary to have blood work done. I would think that these things would be standard to see how a person is tolerating the prednisone, especially since I've been on it 15 months and have only gotten down to 7.5 mg. I least I would expect him to remind me of what to have checked and watch for. It's another reminder of how much the patient has to do if they want a good outcome.

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I would find another rheumatologist if I was in your situation. Mine does blood work every 90 days, pushes for dexa scan before insurance covers it, Watches my A1C and blood pressure closely. He is very involved in my overall health. He even sends me to kidney and liver docs for monitoring. I hope you can find better care.

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@maggie14

My son-in-law has 4th stage liver disease from methotrexate used to treat rheumatoid arthritis. The rheumatologist was not monitoring him at all. Makes me afraid to try it although it should be safe with proper monitoring.

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It is potentially deadly without appropriate monitoring. My aunt died from MTX as her doctor never monitored her. Now I realize her death was many years ago, but the rules never change and are still broken.

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@tillysam

Yes, I did take Folic acid

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What does folic acid do for you? It was prescribed for me and I didn’t notice any improvement. I quit taking it and didn’t notice anything different. Thanks.

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I’m now up to eight 2.5 methotrexate tabs once a week from six. My head is a bit off or dizzy with the increase. I’ll try one more time before I call rhumy. Very attentive & blood tests with scans often. Still at 13mg prednisone. Going to try 12 in a week to taper. Any suggestions?

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@dallas

What does folic acid do for you? It was prescribed for me and I didn’t notice any improvement. I quit taking it and didn’t notice anything different. Thanks.

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I am not a medical doctor, but I was prescribed folic acid along with methotrexate. Folic acid is one of the B vitamins and is absolutely required by your body. One of the many side effects of methotrexate is that it removes? deactivates? Vitamin B9. You won't notice an improvement in PMR symptoms from taking folic acid, but the quite bad result of not having it could be serious. Talk to your physician about this.

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@marieirene

I’m now up to eight 2.5 methotrexate tabs once a week from six. My head is a bit off or dizzy with the increase. I’ll try one more time before I call rhumy. Very attentive & blood tests with scans often. Still at 13mg prednisone. Going to try 12 in a week to taper. Any suggestions?

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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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