Hi everyoneI have been on Methotrexate for 3 years now and although it is great for controlling the joint pain I am so tired all the time to be drained at times.
I have given up any physical training I used to do except for walks with the dog which I have to do.
My weight has slowly increased from 84 kgs to 100 which cannot be good for my joints and I just want to sleep when I sit down.
I have a meeting with the rhuemy team on monday ( the 1st in over 18 months due to the pressure
they are all under so postponements of regular 6 month check ups )
Is there an alternative to methotrexate out there that has worked as well for somebody without this fatigue which is with me all the time that I can suggest trying to them.
Any help will be gratefully recieved.
Thank you
Shy & retiring
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Shyandretiring
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it may not be the mtx that’s causing your fatigue as it’s a very common problem with RA so even changing drug you may well still have fatigue. Just type fatigue into the search box and you’ll find lots of other posts concerning it. NRAS do an information leaflet on fatigue which you may find useful but sadly there is no definite cure for it.
Ask you GP about a blood test for thyroid failure as the symptoms you describe may not be down to MTX but something entirely different and easy to treat. If it’s not that or B12 is another one to ask for at least you know it’s probably RA related so on firmer ground when you talk to your consultant. If of course your already taking Thyroxine it may be time to ask for a review.
The symptoms you describe may be from the methotrexate but could equally be from the RA not being well enough controlled. Either way it’s definitely worth discussing with your rheumatologist. Unfortunately asking other people what worked better for them is pretty pointless as we all react differently (both positively and negatively) to medication. Here is a link to the NRAS page on medication. Have a good read before you go to your appointment and then at least when you are discussing medication you’ll have some idea of the available options. nras.org.uk/information-sup...
Hi, I have been taking mtx different levels for some years now. When I started they gave me tables and I had a lot of problems with they, tired, sickness, headache feeling very unwell and not interested in anything, I had a word with my consultant and they changed me to injections, so much difference, got my life back. Good luck , rake care and stay safe.
Hi. I had mtx for a year and half, it worked wonders for the ra but left me ‘muzzy’ headed and with a horrible metallic taste. I discussed it with my rheumy and they changed me to salazopyrin and leflunomide which worked well for me. I wished I had discussed it earlier. Well worth talking to rheumy team and I hope what they come up with helps you.
Thank you VizwizThat is very helpful , I shall mention the different theories that kind people like yourself have reached out to me with and hopwfully my rhuemy team can come up with the best way forward.
Most DMards can cause fatigue of various grades…so I reckon if Mtx is controlling RA so that you can live more comfortably- we have to decide whether to stick with it & accept we have to learn how to deal with the tiredness…..or maybe ask for a change,,,,,but that will be up to your doctors.
But your weight gain does need addressing so let’s hope you rheumy consult on Monday will produce some answers.
Yes everyone is so different but I took methotrexate for many years it worked so well for me , no fatigue at all but was just taken off it and wish I had not been. But I only am taking rinvoq now which works good but not completely. Still have pain in feet. Hope that helps have a great day!
I'm on methotrexate too, for 9 years. I also suffer from fatigue, but this started as my first RA symptom, about six months before I was eventually diagnosed, and by that time my whole body had swelled right up so I couldn't move.
So, it could be related to the actual disease.
However, when I caught COVID quite badly last year, I stopped taking my immuno-suppressing meds for about 4 weeks. After two weeks my mind was so clear - I'd forgotten how good it could be!! I actually felt alive and wide awake again in my head, even though my body was in a right old state.
It was a lovely two weeks of absolute clarity and a feeling of a huge weight being lifted. It didn't last, because I went back onto my meds, so my body could function again!
I'd be very interested to hear how you get on. Everytime, I mentioned fatigue to my consultant he wasn't interested. Gave me the impression that I'd have to accept it and there was nothing he could do.
Absolutely- you are quite right…when I had those symptoms my rheumy immediately took me off the Dmard that caused them….it was over 10 years ago & I can’t remember which one it was ..but rheumy just said “there are plenty more drugs to try.”
sorry to hear that. i find that since I RA i have to keep really well hydrated. drinking lots of water. and trying to move as much as possible. exercise is a natural endorphine and pain killer and helps with fagigue if you can manage to do some. if you discuss different options such as biological treatments, they are also an option. taking mtx at night worked best for me. i hope you feel better soon
You are lucky the mtx is controlling the joint pain. I have told my rheumy, on more than 1 occasion, that I don't think the mtx does anything. The only answer I get is "it's the gold standard for RA treatment & helps protect the joints" My fingers & toes would beg to differ about that. It's worth trying to get off, it but rheumatologists seem to be obsessed with this treatment and tiredness is part of the disease. Good luck.
Yes Mtx is the Gold Standard & when it works it’s Ruddy Marvellous….but when it doesn’t…even though it might protect your joints is it worth having great joints but no quality of life? We have to decide.
As patients we have to be proactive…not give up on any drug after a couple of months….but when we have given something a good try & have told our rheumy it is not suiting us & we are being fobbed off…..it’s time to say very firmly you really do want to change…if that is ignored…If you have a caring GP explain the situation to him/her & see if they will approach your rheumatologist to review your meds …..if that fails….have a word with PALS, at your hospital …..they may have a word with your rheumy team, or suggest you change to a different rheumatologist at the same hospital.
But we are the only ones who can get things changed if we really feel a certain drug is not for us.
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