I’ve posted here several times about my relationship with methotrexate.. I tolerate it sporadically, but have been persisting as on the while i guess it is working (clinically speaking). But I’m curious to know if anyone else experiences a flare after their dose?
I have noticed for some time that i have increased joint pain and stiffness after my dose - 15mg Metoject - but today has been particularly bad. All my fingers are stuff, both knees really sore and also my neck (these are my worst areas though pain has been relatively well managed recently). And I feel like I’ve been hit by a truck. Very tired, dizzy and nauseous.. (and v tearful but I’m always an emotional wreck post meds)
I can’t find any info on MTX triggering symptom flares but curious to know if others experience similar..
thank you
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Sapphire1701
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How long do you feel like this after the mtx? I don’t think it would cause your symptoms rather that it’s not working and they should try a different medication. Or it could be your body is not tolerating it. Are you on anything else or just mtx? Don’t put up with it, contact your rheumatologist for an appointment.
It usually lasts a couple of days.. sone weeks it’s no so bad, but j definitely have more joint pain straight after injecting..
frustratingly I saw consultant this week and he doesn’t want to change anything for now. He was satisfied that ultrasound of previous very inflamed joints, are now a lot less inflamed.. so in that sense the MTX is working. This week it’s just really hit me..and the last few weeks I haven’t been too bad.
Maybe the heat hasn’t helped this week, I know my fingers have been aching worse with the heat this week. I hope it improves for you but if it doesn’t you need to re-contact your rheumatology team.
I found that I tolerated MTX pretty well especially after I started the folic acid 6 days a week. And at 12 weeks all my symptoms started to improve. But then I started feeling worse again, and I started getting abdominal pain four days after the injection. And my joints were all aching more too.
So when it was vaccination time I stopped taking it and immediately the abdominal pain stopped. And I started feeling better too. I had more joint stiffness and pain, but it was more tolerable than the flare type pain I was getting.
I came to the conclusion that the MTX was not working, but I was also having an adverse reaction to it too.
My rheumy thought I should try it again at a lower dose (I was already on the lowest dose!) and hummed and hawed, and two months later said oh, they don't do a lower dose (which I told her at the appointment!) and that I didn't have enough joints involved to go on any other medication so it was MTX or nothing. I decided nothing was better than MTX!
I too feel awful after my weekly injection. Fingers, wrists & knees are so stiff add to that the headaches and dizziness and the “fuzzy” feeling in my head and l wonder why the drs say persist in injecting it. I have mentioned these problems but have not received any answers to my query. I used to take the tablets but was changed to the injections as l had tummy upsets and mouth ulcers from the tablets. I didn’t inject for a while and felt relief but after telling my consultant l hadn’t injected he told me if l stop the injections l am not allowed to have my rituximab infusions that do help my condition so l am between a rock and a hard place.
Look up the NICE regulation re taking Methotrexate when on Rtuxiimab…it says it is possible not to take Mtx ….at the Consultan’s discretion….but the patient does have to be fully informed & has to sign a disclaimer.
So it maybe that your Consultant has decided your condition is not suitable to go without Mtx.
Ask him to explain to you why he won’t agree…but first try to accept treatment with the Mtx is usually the most successful route.
Thank you for your response. I had asked several times throughout the past 20 years about taking first the tablets & then injecting this drug. The only answer l get is to get the best effect from the rituximab infusions l must persist. As the rituximab works best when used in patients who are on methotrexate. I have seropositive rheumatoid arthritis & he seems to think the methotrexate with the two infusions every six months is the best course of action for my arthritis but l am not so sure about persevering with methotrexate as it has always caused discomfort & l felt better without it but the infusions do help so to get them he says inject weekly. 🙄 l best put my big girl pants on & do as l am told. Thanks again for your advice.
I was on Mtx very successfully for 7 years….then it stopped working as effectly…& I started to have some really nasty central nervous system symptoms….so my rheumy said I should stop taking it& explained I could have Rtx without it as he considered it the best treatment for me.
I have been on Rtx since 2016 without any problems,I went down to only one infusion every six months & have recently gone 15 months between infusions…a few nigggles..but is effective enough without unacceptable side effects so I’m happy with the situation.
I do have Sjögrens as well…and so far my treatment has kept me very comfortable.
I guess all you can do is keep asking if there is anything in your clinical history that makes your rheumy insistent you stay on the Mtx.
I absolutely loathed methotrexate. For four days out of seven I was a walking nauseated, dizzy zombie who felt vile at the very thought of taking another dose of it just when the last one started to wear off. I gave it four far too long years (of hell) and then refused to take it again. My body, my choice.
You don’t have to put up with a drug that either doesn’t work or makes you feel considerably worse than you should all because the medical profession (and I used to be one of it) decides and is intransigent. There are lots of new drugs on stream which can be used as monotherapy. Methotrexate used to be the gold standard and has been touted as such for years, and yes, people do very well on it and they will tell you. The ones that don’t really suffer and often can’t persuade their doctor to give them something kinder.
My methotrexate experience was now years ago and I’ve had most of what medical science has invented for RA and I can honestly say it was the worst drug I’ve ever been on.
If it’s causing you real problems then have a good discussion with your rheumatologist and take control! Best of luck.
Hallo 2Bichons 😁 I’ve progressed toJAK inhibitors which for me have been life changing. I went through all the biologics after MTX and though some of them worked most of them didn’t and occasionally they tried to poison me! Once the JAKs were on stream I went onto Baricitinib which was the kindest of all - a once a day tablet with no side effects which really suited me. Was on it for three years. Unfortunately, it lost its efficacy after I got Covid so am on Filgotinib now - another great JAK , again no side effects and a once a day tablet so am keeping mitts crossed this one will give me a few years of good! Hope you find one that suits.
I have been taking Max for many years.Doses are increased gradually. From time to time swelling occurs. This weather is possibly making inflammation worse , bBut check with your doctor he may change your drug.
I agree with ruth_p. It sounds like you need to try a different med - your rheumatologist needs to help you with this as it sounds like your body is totally rejecting the mtx. I've been taking 15 mg once a week for the past 2 years and have not had an RA flare since starting on the mtx. The only drawback I have with it, is that it so suppresses my immune system that I catch everything and anything that happens to be going around. I just recovered from having Covid for the 3rd time in the past 2 years. So I guess it's a trade off - either a strong immune system or RA flare ups . . . def the downfall of having RA. Keep us posted Sapphire1701 ~ hoping you find a med that better agrees with you
I have only tried Sulfasalazine so far.. and I barely slept.. I’ve been on MTX now for a year, first orally (which was awful) then injections, which I suffer with sporadically. It is definitely working on the disease as pre MTX I could hardly walk, bend my knees, use my wrists in hands,, and in a lot more pain than now. But I do experience quite severe mental health side effects on occasion (which my consultant says he has seen) and then the increased joint pain after injecting - compared to the previous day for instance. It’s like my whole body feels temporarily inflamed for a short time..
Frustratingly I literally just saw my consultant and had a run of a good few weeks, probably as had time off work, and my daughter being home was really lovely.. so life has been gentler for a while. So other than needing a steroid injection in my knee (which is always bad) I felt like I could persist with MTX and perhaps it’s all in my head! Realistically by tomorrow I will start to feel ok again. It doesn’t happen every week.. which is it’s so hard to understand. My hormones are also all over the place (I’m 45) and my consultant said there is research on disease activity and hormone fluctuations. It’s all just so hard!! Yesterday and today have just been horrible.
But now I feel I can’t go back to rheumy for a while as only just saw him!!
I will so be thinking of you! You are way too young to have this pain😞. I'm in my 60's and was only diagnosed with RA a couple years ago . . . so life was good up until then
Yes you can go back…having mental health side effects should not be tolerated or ignored. Give your Rheumy nurse a call & tell her what you have just written here.
I’m a lot older than you & I didn’ suit Ssz either & towards the end of 7 very successful years on Mtx … I seriously thought I was heading for dementia & as soon as I voiced those fears my rheumy stopped the Mtx & prescribed Rtx alone…which has been really successful & I have tolerated it well. … although it did stop working when I had it too close to a Covid vaccination, but thankfully it did work again after 15 months.
Thank you.. i don’t know why I feel like I need to persist, I guess as symptoms are sporadic.. I feel like it’s just all in my head. When it definitely isn’t! I guess I don’t feel my disease js ‘bad’ enough and I don’t want to cause a fuss.. so I just put up with it when it hits.. I’m scared of reacting to another drug, or as I said making a fuss and being made to feel like a hypochondriac.. once I get through the 2/3 days of feeling weak and rubbish, I’m then ok. I guess I was brought up to just ‘suck it up and get on with it’.. but it is rubbish.,
Thank you for your understanding and reassurance x
I know where you are coming from…..but sometimes you have to get your feelings across..write it down…..then add prompts to yourself so that it doesn’t sound as if you are whining…….but mean what you say….try to compose it …appearing to make it looks like it’s the rheumy’s idea …it sometimes seems like a battle of wills…but do listen to the doctor’s point of view.,
Never experienced a flare up afterwards, but I'm not tolerant to high doses of methotrexate. I had the jabs and they gave a horrible rash on my back, along with in creased joint pain, havexa word with your consultant or rheumatoid team.
I too was on MTX for inflammatory arthritis and it helped for a while. After 5 months I still had stomach pain, and my joints were hurting again, with flare ups. I was, needless to say, very disappointed. My hair was then falling out so much I had to cut it short. I stopped MTX. I also have been non stop researching causes of my inflammation. Also educating myself about the OA I have. I am gently exercising, walking, stopped eating gluten, casein, lectins, and keeping my blood sugar in normal range with diet as I fight pre diabetes. I am feeling better every week. I stopped MTX over a month ago.
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