been taking methotrexate since 2021 after RA diagnosis, mild pain in hands and feet. I have suffered from severe fatigue during this time, sleeping all night, sleeping for hours during the day, brain fog, concentration problems at work etc. Before Xmas I had a bad cold so stopped taking the methotrexate, then had norovirus so I couldn’t take it for another week. I decided to experiment and not take it, to see how I felt. I feel amazing, fatigue has stopped completely, I feel human again! I’m reluctant to speak to RA team as they have offered no help regarding the fatigue, and will probably tell me to take methotrexate again?! Anyone else had similar issues?
methotrexate and fatigue: been taking methotrexate... - NRAS
methotrexate and fatigue
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Streetdog
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Tempting as it is to think stopping Mtx is the answer…it probably isn’t…Fatigue is part of the disease & is not usually caused by a drug. So bite the bullet & speak to your rheumy team.
Unless you tell them forcefully that you now really think Mtx is not for you…..they won’t offer a different drug …..because on the whole Mtx is very effective.
No doubt those for whom it was not … will agree with you…..but you are at the beginning of the long RA journey & I know from long experience we do need to take DMards before we move on to the other drugs available.
You have broken the back of it by possibly failing on Mtx….you will now need to take at least one other Dmard before you will be offered a Biologic or some other sort of drug………
I listened to my doctors…..took all the drugs I was prescribed & it still took me 16 years to find MY drug…you are fortunate that access to a lot more drugs is now much easier than years ago….so do speak to your doctors.
I think that was an excellent summary,we all know what a nightmare it can be to get the right drug balance, not taking mtx is definitely the wrong direction, as you say ready nurse and consultant will sort it eventually.
Hi, Do you happen to know which Brand of MTX is more widely used that patients generally get on with? My daughter settled on Matrex by Pfizer now discontinued. Her pharmacy have given her a choice when the Matrex stock is finished (in another 4 weeks). He has said he has Morningside, Sandos, Cipla and a couple of others, can't remember names, apart from Orion. I believe they are all in blister packs too. Any thoughts would be welcome please. Thanks
I’m sorry I have no idea…I came off Mtx in 2016,& as I remember it came as a month’s supply in a little brown glass bottle…I never knew the make.
But tell your daughter to listen to her pharmacist…. but make sure it is the pharmacist she is talking to…not just somebody in a white coat. ….who will NOT know the answer.
But also tell her not to get hung up on brands…I have always taken what I have been given,& right now I have three different brands of my BP meds & they all do the job fine.
Sound advice, thank you.👍
I loathed the effects of MTX and put up with brain fog, lethargy, fatigue and general misery for four days out of seven for four years until I rebelled and refused it. This was donkeys years ago when there was nothing much else and methotrexate was ‘gold standard’ for treating RA.
Lots of people are fine on it and have been on it for years with no ill effects but lots of people are on it and it make them feel vile. If you’re one of them, and it sounds like it, go back to your team and tell them you would like to try something else.
There’s many, many newer and better targeted drugs out there and there’s no need to stay on something that has the effects you’ve described. It’s your body and your life and whilst I appreciate doctors who prescribe these drugs know what they’re doing they don’t live with the consequences. It’s bad enough having RA (I’ve had it for 34 years) without having added problems caused by a drug. Best of luck and hope you get the treatment you deserve.
Thanks for that, feel more positive now about speaking to RA team!!
Hi, What is the better drug to take alongside a Biologic, apart from MTX? Are any of the better drugs on NRAS website? Or is it that NHS prefer to use the cheaper because of costs? I think that RA Rheumy teams would try to prescribed if patient suggests and asks to try, it is possible to do some research and ask, I think?
I stopped my MTX for 3 weeks before Christmas at the advice of my nurse as I was getting an itchy scalp. I also found that the fatigue melted away. Like you I was feeling so positive that perhaps I didn't need MTX but after a few weeks I started to seize up again (and RA related fatigue took the place of MTX fatigue). I have gone back on the MTX (it was only supposed to be a 3 week trial to see if the rash went) and the itchy symptoms came back and I am still fatigued. I'm away for a few days at the moment but will have to have a chat with the nurse again. Problem is that apart from the rash and fatigue the MTX is actually working so I'm in a dilemma. I can't function with active RA as I get widespread tendonitis very quickly seizing up every joint.
As you say., keeping up communication really is key…..as others have said…if we just mutter to our selves …& don,t keep our rheumy teams in the loop…..they will think everything is going to plan.
I agree, I think if a patient does a lot of research and perhaps? comparing with patients on forum? there might just be a better drug that's suitable to perhaps some patients or even most?
Really it’s pointless thinking that because X works for Polly down the road….it will work for everyone…..plus most of us won’t understand what we are reading on research projects.
In the past I have taken what my rheumy has prescribed….if it has had bad side effects…… I’ve told my Rheumatology nurse is it not suiting me would she please ask the doctor for an alternative.
But you have to tell your rheumy team…because if you don’t - you are the one who suffers….so it’s self preservation….not being picky!
yes true but when you have a very busy career, trial and error can sometimes make you lose your job or be in the bad books for illness, therefore really touch and hopes to be settled on meds are so important to hold a job down. Some who don't have long term illness don't understand so well!
I’m afraid at this point in time…if the side effects of a medication are threatening that somebody is likely to lose their job, they just have to make time to contact their rheumy team …..even if it means contacting the hospital patient liaison team to intervene .
if you really think this is the situation your daughter is in……I would advise her to contact her hospital PALs team ….who can arrange to get her an appointment to see her Rheumatologist to see if a change of medication will help.
But tell her to make sure she writes out a detailed description of which drugs have disagreed with her,& to describe how these symptoms are likely to mean she will lose her job. If she has only verbally told her rheumy nurse “the drugs aren’t working’”…. sad as it is, that would not necessarily trigger an emergency consult. She will have to bring in the big guns,
Shame let's hope best! She is a professional Actor, so not the career to be in with RA!
Well lately there seem to be a lot of Actors & Sports stars who are coming out with RA…so it’s no bar…but no doubt they have had their difficulties.
I Hope your daughter finds a more suitable medication very soon.
Thank you, Yes many people on the whole all ages with RA and similar. I know what the expression "life's a bitch" means!
For me MTX is awful. Fatigue, brain fog, diarrhoea you name it. Let alone infections and 5 bouts of Covid.
But - no one would listen to me. “Keep taking it” is all I heard.
In the end I stopped. I told them it was rubbish and not working and -In fact I literally threw it away as all i was getting was ill health on top of ill health.
Now am on Amgevita and all is ok apart from the skin rash/hives
Tell them it’s no good and you want change.
Thanks, will look up Amgevita, not heard of it
Unfortunately looking up a drug someone else is taking probably won’t help.We all have our own individual needs…if your rheumy nurse offers you a different Dmard, your rheumatologist will have told her which of one,two or three may help you. ….calling on his past experiences.
Do write down all you are feeling..it really will concentrate your rheumy,s mind seeing that you have made the effort to help yourself.
Sometimes the Biologic needs a second line to keep biologic going for longer. I wish there was another better drug?
There really is no all round “better drug” . ….& the only person who from training and experience can help , is the Rheumy consultant……who from physical examination, blood tests & talking with the patient can choose the drug he thinks most likely to help.
I often read on here of people singing the praises of a drug that I described as poison from hell……so I changed drugs…& I did that for 16 years until I found the drug I am now taking …… and I still have my fingers firmly crossed that that continues to work!
Yes, fingers crossed!
The effects of MTX including unrelenting fatigue were worse than my moderately severe RA.I took it for 11 months then decided no more I was then offered biologics which had none of the side effects of MTX.
You do not need to continue with medication that leaves you feeling rough.
Remember that your Dr only knows what you tell them. I would be relaying your recent experience with your team.
I havnt yet found an answer to the fatigue issue, but I have found myself in it trouble with rheumatoid flare ups when I e stopped taking it. Speak with the rheumatology team, share your recent experience with them, and directly ask for an alternative be considered. I’ve tried two different alternatives and ended back on methotrexate. I will ask about further alternatives next time I’m seen in clinic which is later this month
Hi, Do you think the brand of MTX could make a difference? That could be food for thought? Because most of MTX brands have different ingredients, this would be trial and error though? I think the Orion MTX tablets are a bit simpler, but not entirely sure?
I honestly don’t know. Mine has been metoject injections for years now
I take all different makes depending what the pharmacy has and have noticed no difference between them. It’s a known possible side effect of methotrexate with all makes if you look at the PIL. It’s the RA that causes my fatigue and I’ve not found a remedy for that whatever I’ve been on 😔
Best wishes in any case! thanks
I fully sympathise with this post. Methotrexate really didn’t agree with me either, I felt absolutely awful for days after (despite injecting) I was taken off it quite quickly as I made quite a noise about it. My liver also did not like it.
It made me feel worse that my RA.
I do feel you should definitely contact your rheumatology nurses. Discuss with them, they won’t know how bad you’re feeling unless you tell them.
All these terrible side effects can be very upsetting. What did nurse replace MTX for you was there an alternative?
It wasn’t replaced. I’m now on Filgotinib as a mono-therapy. So far no side effects. I can’t comment on long term efficacy as I’ve had to stop/start medications recently due to spinal surgery, but I’m able to do most things I previously did with minimal pain.
If you refer to the NICE guidelines for treatment of rheumatoid arthritis you can see the pathways our teams have to follow, in essence trialing the cheaper, conventional DMARD’s first.
Thanks
I haven’t found an answer regarding the fatigue. I am in remission (still inject Humira) but I still have fatigue. I have had different medications to controls my RA over the years but nothing has made any difference. All my bloods are fine. I mange to go for walks, have a good diet but still exhausted. I can be in a car with hubby and asleep within 5 mins 😂My GP and consultant have both said it’s normal as your body is fighting an illness. I wouldn’t come off medication without advice! You may think you are ok but RA can also damage your internal organs. In the early years I would go through good spells and question my meds but that’s the nature of RA ,you can be fine for days/weeks/months and then it can flare. Speak to your nurse and can some advice and discuss tour medication .
That's brilliant to just be on a Biologic. How long have you been on Humira for? So good you are in remission!👍
Have had RA for over 18 years. Some years undiagnosed.( my fault didn’t go to GP!) I think I have been injecting for around 16 years. The first 2 years were a bit up and down but as soon as I injected it worked! I am very thank ful
That is good news! Good job! take care
Thank you for sharing this Streetdog. I was diagnosed with “early RA” in April 2023 with similar symptoms, pain in my hands and immediately started on MTX. I feel the MTX side effects (everything you and others mention) are worse than the actual original condition.
I developed a painful sore throat three weeks ago, and haven’t taken MTX this week and awaiting a call back from the RA Nurse (takes them around 3 days to call back), I’ll be having the same conversation.
Reading your experience, and the comments, have encouraged me to discuss my treatment, as they do keep saying, “just take MTX and the side effects are the condition manifesting itself in me”
I too want to take a break from the MTX and see how I feel, but also very aware that I don’t want to make the situation worse by not taking any medication. I find, they just don’t have the time to talk to you properly, and I’m “in the system” for a Consultant’s appointment, which I’ll just have to wait for, as they don’t know when that appointment will be.
Really appreciate the comments and experiences shared on this forum, as it really helps me to make better sense of this condition. Thank you
As I said to Streetdog….write down what you have said here…& hand the letter your rheumy nurse to show the rheumatologist.
They do discuss patients when we are not there ,& having your written feelings to hand could help.
Hi. I think AgedCrone sums it up well. My own experience is that I had to stop mxt for 8 weeks because of a breathing problem that turned out to be nothing to do with mxt. I know it had to be stopped for investigation in case mxt was the cause but there were disasterous consequences. I was fine for 6 weeks then by the 8th week I was virtually bed bound. I couldn't move an inch without extreme pain everywhere. I had to have emergency treatment with huge steroid doses on four consecutive days which caused even more problems including blisters inside my mouth and many others. My rheumatologist said he had never seen anyone so poorly. Now, of course, this might not happen to you but be aware. You can't just stop and start these very strong drugs without careful supervision from the experts. Please speak to your rheumy team before making a decision. I wish you all the best.
Taking a step back…I think it’s very obvious Mtx doesn’t suit all of us……& these days thanks to Dr Google & sites like this, we mostly know that when we are prescribed it ….& human nature being what it is - we tend to think we will be one of the unlucky ones.
But ……..trying to ignore the horror stories…all anyone can do is give it a good go,& if it’s not for you….don’t try to verbally hassle with your rheumy, I know it’s galling when a rheumy says your blood tests show improvement or to try a bit longer …..there is never enough time during the short consultations we have these days, to get the real point across & we tend to get a bit emotional & feel we are being ignored.
So anyone struggling with any medication…Mtx does seem to be the most complained about .…. might try sitting down & listing all the nasty side effects they are experiencing , describe how the drug in question is making things worse rather than better ………& send that written info to your rheumy….asking politely but firmly to change drugs.
If that gets you nowhere….ask your GP to refer you to another rheumatologist for a second opinion . If a drug really isn’t for someone…that person is the only one who can alter things ……by all means read all the experiences others have had….but understand everyone has to tread their own path…to get a successful drug prescribed.
Good Luck to everyone who has not yet found that drug, …
You are absolutely correct in saying you can just mess with these strong meds! Heard that quite a lot! I think you have to stay on track and have a sensible lifestyle too! but always hard job!
I have just finished my MTX journey after 14 years of use. I can honestly say my fatigue is still here, I'm on a low dose of steriods and leflunomide. I personally myself feel the symptoms of RA give you fatigue. Also I've had many side effects from MTX so maybe your right for you. Don't be pressured to stay on any drug, I did this for years and I believe it caused me long term damage.
I was having similar problems with MTX. Fatigue, brain fog, feeling yuck all over. Then it got worse, I started having abdominal pain four days after the injection, every single week. i stopped it for the covid vax and felt so much better. Told the nurse, who said you have a follow up appt in a few weeks, see how you feel then.
I told the rheumy but I made the mistake of saying I would rather have joint pain then the abdominal pain. so she said fine, no drugs, off you go, see you in a year, (my paraphrase, her long winded ramble also included some weird stuff about dosage).
So here I am untreated for psoriatic arthritis. But at least my mind is clear enough to work on my PhD.
Wow! That is terrible. It is like your rheumatologist is punishing you! I had the abdominal pain 4 days after my methotrexate injections, also. I couldn't even function. Can you get a new rheumatologist?
Not easily. There is only one rheumy in the trust that visits a community hospital near us. To change we would have to go to the Big Hospital which is a nightmare for us. It is nearly an hour's drive away, there isn't enough blue badge parking (my son is a wheelchair user) and the huge queues of ambulances takes even more parking area. There is another rheumy that does appts at another community hospital but he was the one I had to make a formal complaint about.
The irony is I am an Expert by Experience and sit on the clinical pathways group for MSK with my ICB, and they don't even show up for meetings there either!
Gosh! Good luck I hope you get better soon.
It sounds like having those viruses back to back has created a natural experiment that shows the MTX side effects are significant for you. That is helpful information, as there is so much overlap - especially the fatigue - with RA itself and it can be hard to tell what's causing what.
I was diagnosed around the same time as you and also have unhelpful MTX side effects, though less severe than yours, and am looking at reducing the MTX (in combination with adding a new medication).
As others have said, treatment for RA is vital but you don't have to put up with a medication that causes poor quality of life - there are lots of other DMARDs you could try if MTX isn't for you. Please talk to your rheumatology team about alternatives as there may be one (or a combination) that keeps your RA under control AND allows you a better quality of life. Wishing you all the luck with this - finding the right treatment combination isn't always a quick or easy process.
Yes, exactly the same, but I stopped taking Mtx because I caught COVID. An identical experience in July 2022 and again in December 23. I never felt so alive and clear thinking. It was wonderful, until I started re=taking the meds. Please, if you find any solutions, let us know!
I hope we can all find a solution, yes please let us all know!👍
All the DMARD drugs ie disease modifying,are build up drugs so if you stop them you will only get the RA symptoms back after about 4 weeks or so. I seem to be very lucky in one respect that I have never really experienced much fatigue. I have been on sulphazalazine for donkeys years and have tried leflunamide, Hydroxyxhloroquine and funnily enough never methotrexate so perhaps thats why I have not had fatigue?!
I was only put on a new drugs baractinib 3 years ago despite all my joints being fused or damaged. I have had RA form 50 years but there was never the meds or surgery available then. I agree with the others write down the problems you are experiencing and ask the consultant to change meds. You will find that many have problems and you have to balance this against the reduced flares and loss of stiffness. Always write down the questions and points you need to bring up in the appointment and do not let the consultant end the consultation until you have gone through them all!
I hope you find a better solution soon
Do you find Sulphazalazine better than MTX? And does Baractinib have many side effects, how are you getting on with it? I have heard that Baracitinib is a Biologic in tablet form?
Baracitinib is a JAK not a biologic. If you look at the NRAS website they have information about all the drugs there 😊
👍Thanks
I have been on methotextrate for 8 years. Tablets at first , which made me ill, sickness , diarrhoea amongst other things, not fatigue tho. After a year I started on the injections which were a life changer. No side effects whatsoever. I reduced my dosage to 7.5 mg which I’ve been taking for 6 years and have been in remission since then. Saw a new Rheumy 5 weeks ago who suggested as I’m in remission, to try and come off Methotextrate, which I have. Worst decision ever ! This week I’ve had my first bad flare up in 6 years. Hips, shoulders, feet, elbows , struggling to get in the car, can’t bend down. I’d forgotten how debilitating a flare up can be. So I’ve gone back on the Methotextrate and Naproxen and hope it kicks in soon. We all know Methotextrate isn’t for everyone, and it’s a very toxic drug. But for me , I now realise that being free from RA outways the damage the drug does . Good luck in whatever decision u make.
That is good that you were on a low dose of Mtx injections. I hope it kicks in for you soon again. Are you on a biologic too with the 7.5mg MTX?
No , I started off on steroids, and 10 other tablets including DMards , and 22.5 mg of Methotextrate. Came off all of my tablets , of my own accord and gradually reduced my Methotextrate. I also swear by Turmeric Golden Paste, and take vitamin d, magnesium glycinate, collagen and drink aloevera every day. But obviously the low dose of Methotextrate is needed for me
You are obviously doing your best, great! best wishes
MTX gives many people a new life with a success rate of around 60 %, but that means around 40 % either don't tolerate it or it doesn't have the desired effect.If a drug isn't for you, then isn't for you. It is easy to feel you are the only one , which is why forums such as this are really important for 40 % or so to share experiences.
I would not take any medication without knowing the side effects. All choices must be informed choices, so yes, ask and read up about possible side effects that taking powerful medications might have on you.
All Drs have a duty of candour. Being truthful and honesty is part of their job, it helps create an equal partnership.
Hi streetdog, I have been taking methotrexate for almost 5 years along with hydrocloxy , for pains in wrist and feet, while on these drugs I have constantly felt fatigued, sickness for two days after taking MTX , over the years my mood has been flat and I was then having reflux and heart burn as I was also prescribed Naproxen ,inhibitors as I still had swelling in fingers and tendinitis in my thumb which I lost some use. I finally had enough and thought not only are the drugs making me feel ill and low in mood , they are not preventing joint damage. Last apt with Rheumatology I was advised they will increase MTX and maybe up Naproxen! That was in August have decided no more drugs and I have adjusted my diet : I now fast for 16- 18hrs a day, no ultra processed food , plenty of fresh fruit and Veg, no sugar or refined carbs ( I do have the odd treat on weekends or special occasions. I ensure I have at least 30mins exercise daily more if I can and get a good nights sleep. 5 months on I feel amazing no low mood, plenty of energy ( for a 55year old!) I had forgotten how happy I can be and have a more positive outlook. Yes the diet can be hard but just a 12 hour fast is effective. My RA I feel is no worse and my hands have improved. Will this last I don’t know but I’m doing my best to take control without medication. I have loads of energy and no more brain fog, I also take vitamin D and cod liver oil supplements. I would suggest checking out Professer Tim Spector on UTube his intensive research makes a lot of sense, also look up fasting and the benefits for inflammatory disease. I can now also have occasional alcohol without worrying about how it is affecting my liver !! Medication is treating the symptoms not the cause and I don’t want to be on meds for the rest of my life ! Good luck x
Sadly all research including Tim Spector’s work agrees that DMards are essential to prevent not only joints..but I think more importantly organs.
Do have another talk with your rheumy team….as I said earlier it took me 16 years before I was prescribed a drug from which I have no pain & no side effects. At one point I thought that drug was Mtx …which I took for7 pain free years…with no damage to joints or organs, but overnight it just stopped working,
If there are people who take no RA drugs….& have no problems down the line….maybe they could let us know for how long that has lasted.
Very interesting, I do try to eat healthy, varied diet. Had quite a stressful morning, which previously, would have meant an afternoon in bed, but without the methotrexate I kept going without the usual overwhelming feeling of fatigue. I’ll discuss with my rheumatoid team, see what the say.
yes … I can’t take it … I put on a stone in weight in 10 months on it as I was sleeping 3 days out of seven . Also , it didn’t help me. Everyone is different . You have to do what you feel is right for yourself .
All RA meds have side effects. It is very rare for us not to experience any. It is a matter of balance and finding which medicine / medicines makes us feel better with the lowest side effect. It is a matter of trial and error. I wish I didn't need any of these drugs. I have had RA for over 50 years . I tried methotrexate but it was not for me. I was on sulphazalazine for years, but I know many have problems with this medication . Sulphasalazine might be responsible for my tinnitus and stomach problems but it is hard to know if it is a side effect or not. Do what you feel comfortable doing and try something else . You will never know unless you try. Make sure you are monitored on any new medication . Good luck.
I hope you don't go back on a drug that makes you feel so fatigued and tired. Who wants to walk around feeling like a zombie? Maybe try leflunimide and see how that goes.
Actually I felt better after being on the drug. Talk to your health care provider so they can explore other options. RA us nothing to play with
My daughter was getting on well with the Orion brand of MTX and then the Matrex, but Matrex being discontinued. Which brand of Methotrexate tablets are or were you taking?
Morning side? Brand changes each time I get them so it’s not that
5mg folic acid for 6 days but not on MTX day. Take MTX after a main meal in the evening with water. Drinking a fair amount of water everyday helps, I think?
I found that taking my folic acid in the morning the day after methotrexate rather than the evening helps a bit x
I'm just a beginner here, having received an RA diagnosis in December on the basis of blood tests (I have no joint pain or problems, but my blood markers agree with the RA diagnosis; elevated RA and anti-CCP). I also have three other diagnoses: PSA (psoriatic arthritis), PMR (polymyalgia rheumatica), and fibromyalgia. My PMR pain and stiffness have largely gone away by my adopting a carnivore diet, so I am glad for that.
I have only been on MTX for three weeks now, having started my prescription after the holidays on the advice of my rheumatologist. She reasons that MTX should (may) help both the RA and the PSA. I am taking 25 mg a week (12.5 mg in the morning, 12.5 mg in evening).
I've chosen to take the MTX on Thursdays, as Thursdays and Fridays are a bit less demanding for me. In the past three weeks, I have had two mouth sores (now healed; hope I have no more of those!), and I experience significant fatigue from Thursday afternoon until Saturday morning. I attribute this fatigue to the MTX , and I'm hoping this fatigue problem goes away over time as my body adjusts. Is this likely? Or is this the new normal? I see that from this thread that, at least for some people, the fatigue is an ongoing problem.
I welcome any and all sharing of others experience and advice. Call me "new to MTX".
Hi benhemp. It may well be the new normal but I will say that some weeks I'm more fatigued than others, so I'm experimenting with different things like going to bed earlier, cutting out sugar the day I take the drug or sometimes the day after. I haven't worked out what helps cos I haven't kept a record but something I'm doing is helping. I'd encourage you to try it out and get to know your body.
Also, I'd recommend posting your questions as a brand new post instead of replying to an existing post, more people will see it that way 
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