Methotrexate side effects

Posted by relaxedphd @relaxedphd, 3 days ago

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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I took methotrexate at the dose you are on. I had all the side effects you mention. After being on it a month I had a doctor's appointment and told him about the side effects and the fact that I felt like I had a mild urinary tract infection ever since I started it. He immediately lowered the dose to 4 pills for a total of 10 mg. He said that 10 mg is the lowest effective dose and that's the lowest he could go. The side effects got better and no UTI symptoms.

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

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

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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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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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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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I take the same weekly amt of methotrexate since May ( & am on prednisone since end of March now lowered to 5mgs). (I have prescription for folic acid as well to counter the methotrexate & take Alendronate to counter the bone wasting prednisone!!) I don’t have nausea but the morning poops are almost like diarrhea. It almost makes me hesitant to go to stretch class in the morning!!! But after the mornings things are ok. I didn’t know which drug was messing w/my intestines! At first I thought it was my decaf coffee so I went ahead & gave that up. Now I’m trying decaf green tea. But I don’t see a change! Gads. I have a Rheumy appt end of month w/labs to see how things are. I haven’t met w/him in 3 months.
I have to wonder what these drugs are doing to our insides? When (if) we get off this stuff do our inners repair themselves to some degree at least? Liver? Intestines? Skin? What else is affected?

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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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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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Profile picture for kare1 @kare1

I take the same weekly amt of methotrexate since May ( & am on prednisone since end of March now lowered to 5mgs). (I have prescription for folic acid as well to counter the methotrexate & take Alendronate to counter the bone wasting prednisone!!) I don’t have nausea but the morning poops are almost like diarrhea. It almost makes me hesitant to go to stretch class in the morning!!! But after the mornings things are ok. I didn’t know which drug was messing w/my intestines! At first I thought it was my decaf coffee so I went ahead & gave that up. Now I’m trying decaf green tea. But I don’t see a change! Gads. I have a Rheumy appt end of month w/labs to see how things are. I haven’t met w/him in 3 months.
I have to wonder what these drugs are doing to our insides? When (if) we get off this stuff do our inners repair themselves to some degree at least? Liver? Intestines? Skin? What else is affected?

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I appreciate your comments on this. Sometimes I wonder if things will go back to "normal' after treatment. I'm 79 years old and have type 2 diabetes as well as other autoimmune issues. I try to keep my mind positive and listen to my body.

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Profile picture for linda7 @linda7

I took methotrexate at the dose you are on. I had all the side effects you mention. After being on it a month I had a doctor's appointment and told him about the side effects and the fact that I felt like I had a mild urinary tract infection ever since I started it. He immediately lowered the dose to 4 pills for a total of 10 mg. He said that 10 mg is the lowest effective dose and that's the lowest he could go. The side effects got better and no UTI symptoms.

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thank you for your response, I do plan to talk to my Rheumy about trying a lower dose.

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