Methotrexate side effects

Posted by relaxedphd @relaxedphd, Aug 11 4:19pm

I was diagnosed with PMR July 2024 and Sjogren's syndrome Dec.2024. I'm down to 5 mg of prednisone a day which seems to be working (except I seem to "flare" when it rains or the barometric pressure changes). My question is about MTX. I take it orally once a week 6 pills 2.5 mg each. The day after I take it I get diarrhea, fatigue and many times nausea as well. The side effects are not as bad as they used to be and I'm wondering if they ever go away or should I ask about a lower dose of MTX.? If I have to put up with the effects for one day, I will. I would just like to know what others experience.
thank you

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Profile picture for pmrsuzie @pmrsuzie

I thought folic acid was prescribed along with mtx to help with side effects?

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I appreciate your comment. I do take folic acid, not sure it does much for the side effects for me.

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Profile picture for pdxmac @pdxmac

I requested the injection form of Mx for those very reasons. Though I dread poking myself each week, I've had zero side effects. It's been a worthwhile trade-off for me.
Side note: after two years of not being able to taper below 9mg pred, even after adding Mx, I started Tyenne (biologic similar for Actmera) very recently. It's too soon to really tell, but signs are very positive so far. I asked the rheumy about stopping Mx and she said she wants me to focus on dropping steroids first since they have much worse effects than Mx.

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Thank you for your comments. I had not considered the injection.

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Profile picture for prestol @prestol

Even though I had no side effects, my rheumatologist switched me to the injectable form because it is better absorbed and therefore more effective. I inject with a really tiny needle and I’ve become used to it. I would ask if it’s a possibility for you.

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Thanks, that is something I want to talk to my doctor about.

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Profile picture for seniormed @seniormed

There is a good chance the injection would avoid the GI side effects.
You should be taking folate daily as well.

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Thank you. I do take folic acid and am going to talk to my doctor.

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Profile picture for gmdb @gmdb

MX will only have less worse effects than steroids if you don't get any of the bad side effects of MX. There are lots. It can severely impact on your bone marrow and that leads to all sorts of bad issues, with severe disruptions to blood cells, inflammation in spleen and pancreas, and escalating temperatures. Admittedly this type of toxicity which I experienced after two years is rare, but if the Mx is no longer helping reduce the steroids, there seems to be no point in taking that risk. Been off it for 8 weeks after an emergency stay in hospital and feeling so much better.

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Thank you

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Profile picture for linda7 @linda7

I took folic acid 1mg daily as prescribed and still had side effects.

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I have been prescribed folic acid 1-3 mg daily. I can decide how much I need depending on severity of side effects.

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I took MX for about 1 year. Had very few side effects, until I developed pneumonia and ended up in VA hospital for 12 days. The doctors had a difficult time determining what caused my pneumonia. Unfortunately, the doctors don't consult with each other, as my rheumatologist would have told them it was from the MX. Inflammation of the lungs is one of the side effects.

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Here is a related discussion to check out too:
- Using methotrexate with PMR: https://connect.mayoclinic.org/discussion/using-methotrexate-with-pmr/

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Profile picture for murphy2370 @murphy2370

I took MX for about 1 year. Had very few side effects, until I developed pneumonia and ended up in VA hospital for 12 days. The doctors had a difficult time determining what caused my pneumonia. Unfortunately, the doctors don't consult with each other, as my rheumatologist would have told them it was from the MX. Inflammation of the lungs is one of the side effects.

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I had a similar experience recently. I was on MX for 18 months with tiredness 1 day a week as the only side effect. Since Jan this year, I ended up in hospital on several occasions with fever, increase in muscle pain, inflammation in spleen and pancreas and eventually severe anemia. All possible side effects of MX but not identified at the time of hospital admissions. No infection and all other possibilities ruled out, so MX was stopped. That was 10 weeks ago, and after a recovery period things have improved significantly. Although still taking too many steroids, bloods and inflammation are back to being normal for someone with PMR.

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Profile picture for gmdb @gmdb

I had a similar experience recently. I was on MX for 18 months with tiredness 1 day a week as the only side effect. Since Jan this year, I ended up in hospital on several occasions with fever, increase in muscle pain, inflammation in spleen and pancreas and eventually severe anemia. All possible side effects of MX but not identified at the time of hospital admissions. No infection and all other possibilities ruled out, so MX was stopped. That was 10 weeks ago, and after a recovery period things have improved significantly. Although still taking too many steroids, bloods and inflammation are back to being normal for someone with PMR.

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Thank you

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