1. < Polymyalgia Rheumatica (PMR)
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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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psoriaticarthritis | @psoriaticarthritis | Sep 20 5:21pm
In reply to @spiritguided1 "I am sorry that you had the reaction that you have had. I likewise could not..." + (show)
Profile picture for spiritguided1 @spiritguided1

I am sorry that you had the reaction that you have had. I likewise could not tolerate the drug. I stuck it out for 12 weeks and it was 12 weeks of hell. I could not function I spent most of my time in bed because I could not stand up. I was so nauseous and giddy. I wanted to get relief from this dreadful disease so badly that I braved it out. With hindsight, I should have reported back to the rheumatologist earlier. All these drugs are just trial and error what suits one person and does the job doesn’t always work for another. I have had some relief from changing my diet. Omitting gluten and taking cod liver oil and vitamin D. I don’t think the disease is ever going to go away on its own. It is awful. I am dreading the winter for I am much worse when it is cold or when it is hot. Spring is a welcome time for me. I am one of those people that seems to get horrendous side-effects from all medication. I wish you better luck than I have had. There are alternatives to methotrexate, I advise you to seek help from the professionals. Don’t suffer as long as I did. It took three months out of my life. Just hang in there. My next course of action is to try an infrared heat lamp. I am constantly doing research online. I would also indicate to you that stress is a factor that makes things much worse for me. When I am anxious, I am in more pain. I’ve just had a very relaxing holiday in the Sun and felt great. Then you get home and all the daily stresses change things.

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Looking forward to your update on red light therapy or infrared heat lamp. We have a naturopathic physician who provides this service, I have not learned any feedback.

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gmdb | @gmdb | Sep 20 5:32pm
In reply to @dvorahberlin "That’s good to know, I am so nervous to start Methotrexate. My rheumatologist wants me to..." + (show)
Profile picture for dvorahberlin @dvorahberlin

That’s good to know, I am so nervous to start Methotrexate. My rheumatologist wants me to take 10 mg weekly. Are you taking it together with prednisolone ?

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10 mg is usually just the lower dose starting point with an increase up to 20 - 25 mg per week. It usually takes 2-3 months to do any good if it is going to work for you. There are a lot of people it doesn't work for. Initially it worked for me and helped me get down from a high dose steroids for PMR/suspected GCA to under 9 mgs in 10 months. But then it stopped working and my steroid dose kept going up again due to a very high CRP. My doctor insisted that here was no problem with the methotrexate and there was something else. My blood cell count was all over the place and I developed anemia. Hospital emergency staff took me off methotrexate and my health improved over the next 8 weeks with blood cell counts returning to normal range. Please make sure you have regular blood tests and question your doctor about poor blood counts if they appear. My doctor should have picked up that my results were as bad as they were. He is normally very good but he has a faith in methotrexate that led him to be being less cautious then he should have been.

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dvorahberlin | @dvorahberlin | Sep 21 4:38am

Thank you so much for your detailed response. I really appreciate it. That’s why my rheumatologist is keen on me starting MXT , to lower the prednisolone intake ( on 15 mg at the moment) and he seems to think it’s the way to go . But I have now decided I really don’t want to start with this meds. Will see how the tapering goes over the next months. I am going to have blood tests every 6 weeks or so including HRT.
Still new to all of this as I only got my diagnosis 6 weeks ago after a sudden onset of incredible pain.
All the best to you and thank you

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thomo | @thomo | Sep 21 5:07am
In reply to @lindaadele "Methotrexate reacts differently with each and every person. I did not have any good experience with..." + (show)
Profile picture for lindaadele @lindaadele

Methotrexate reacts differently with each and every person. I did not have any good experience with methotrexate or any other medication‘s for that matter so I’m not a good example. After taking methotrexate for a while it didn’t make me feel any better and I ended up very dizzy and it did not do anything for me either. Most people have no problems with methotrexate. My suggestion would be to discuss the situation you were having with MTX with your rheumatologist. My very best wishes to you going forward.

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Thanks so much for that advice. Take care.

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robstawicki | @robstawicki | Sep 22 3:00pm

I also take MTX, 6 tablets on the weekend along with daily 2 to 6 mg pred, Hydroxychloroquine 200 Mg, and folic acid. Bad weather seems to make the PMR flair. I also get my eyes checked yearly due to the side effects of MTX. The biggest issue I have is pain always in the left upper arm now that I have it pretty muchunder control. I plan on speaking with my GP and rheumatologist about the connection betwen the Pfizer Covid shot and my PMR as I started the symptoms about 3 months after the shot. I am a 69 year old male.

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