Methotrexate side effects
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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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.
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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1 ReactionThank 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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1 ReactionThanks so much for that advice. Take care.
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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1 Reaction@kare1
Suggestion for the diarrhea after suffering for a few years. Increased my fiber with organic oatmeal. I order the microwavable cups online on Amazon. Easy prep in the morning. I also take Organic India psyllium capsules throughout the day. Two at a time with 8oz water. Never more than 4-5 capsules per day. Ease into it to give your bowels to adjust. Don’t take all at same time and remember drinking water is key. Took a couple of weeks to bulk stools up to normal. I am regular and have normal bm every day with no diarrhea anymore. Happy days!
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1 ReactionAs a vegan I’ve never had problems w/loose bowels. Beans bran water yes! (I’d be afraid to add more supplements to my repertoire! ) so adding more works? Interesting. Oatmeal ok! Haven’t eaten it in many months.
I’ve Always regular. After the PMR diagnosis adding pred & metho things got way looser in the mornings. Now as I’ve gotten to lower pred these many months later things have gotten less urgent shall we say. I still won’t go for early morning walks or morning birding hikes, tho. Still don’t trust my body. But by 11:00 or so I feel less restricted. Some have suggested taking an anti-diarrhea med before going on a hike or trip !! Gads. Maybe it’s prednisone or methotrexate that messes w/ the system.
I’ve just gotten an app on my phone to remind me to drink more water as I tend to forget in the afternoons.
Thanks for advice. I’m sure it will also help others if they have this issue!!
I am just starting on MTX. On my third week. A minor upset stomach, two days after. Doesn’t last long. My teeth and gums have become very sensitive to cold. Not sure if that’s related to the MTX or not.
Finally diagnosed last November with PMR. Had tapered to 13 mg, but a flare put me back to 20mg. Tapering now at 1mg every two weeks.
Thanks to all that share your experiences.
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1 Reaction@linda7 likewise. I take folic acid 1mg 2x a day.
Took methotrexate 10mg once a week on Fridays.
I had what I called the lost weekends, Saturday half functional, Sundays on the couch.
Then the “face melting” started after week 2. My face felt like novacaine was wearing off. Constantly. Then my hands and feet got numb. And it kept getting worse.
My dr was reluctant to have me stop after 5 weeks. Said there are “atypical side effects, only one other patient had this experience.”
Now she had 2. I am off it for now.
Was on 12.5 prednisone and more pain and spasms then I was feeling at 15. So I upped it until my next appointment in 10 days.
Two days later and I am feeling better.