Coming off Methotrexate

I am thinking of coming off Methotrexate. NOT BEFORE ASKING. I am so fed up with all the side effects.. anyone. Else done this and how was it?

[Hidden]

Hello Magnolia25 ,I came off Methotrexate in April , and I’m still off it .

I did ask my RA nurse first , and I had a face to face appointment with her , she agreed that I could stop taking my meds because of the side effects . I’ve had bloods tests since and all was ok , I’m being monitored , but so far so good 🤞

I’ve also spoken to the consultant , and he is on board with it . He said I was in remission , but he did warn me that it might be short lived .

To be honest mentally I feel better knowing I don’t have to dread Thursdays anymore when I had my injection , and the washed out feelings that followed for a few days .

I say go for it , make contact with your team 😊

[Hidden]

Hello Yes I did having tried all their suggestions to manage the side effects and once I felt I had given it a good go. I wasn’t in remission though and would have been due to have the dose increased and just couldn’t face it anymore. They forgot to send me a follow-up appt and I just stopped it which in retrospect was stupid and I do not recommend you do this, I just felt bad for not coping with the MTX.

I spent the first month just completely relieved then the second month a bit more uncomfortable and realising that the methotrexate was maybe doing more than I thought and the last little while I have been in quite a lot of pain.

The department ironically contacted me about some bloods they wanted for something else and I had to admit I‘d stopped it without telling them. (I think I felt bad as they had put so much effort in to try and help me tolerate it and I felt I was wasting their time and running out of options etc etc)

They were great and just said „we see it a Lot with methotrexate don’t worry“ and are now sorting out appts and will probably try a biologic - my screening bloods have been sent.

I really wish however I had discussed it before as I could have avoided feeling so stupid when I got „caught“ and I could have had a plan in place. I had been fully expecting to flare but not this fast and not this badly.

The experience did teach me though that they understand that I need to be able to tolerate the drug and that it is a valid reason for asking to review your treatment plan and that you have the right to say this is not for me and that they have seen it all before and (as long as you are being reasonable of course) will do their best to come up with a plan.

I wouldn’t recommend you just stop but would 100% recommend having that open conversation with your team. Good Luck x

[AgedCrone in reply to Hidden]

You are right….90% of getting settled on the right medication to get you to a comfortable place is talking things through with your rheumy team. Many were the times I went into a consultation determined to stand my ground and come off a certain drug only to end up listening to what I was told ….deciding to give it one more try …..and all of a sudden I was feeling better.Your rheumy team really is there to help you… they don’t just offer you any old drug…..they take all your symptoms and blood results in to account and your mental attitude is taken into account too…..they can judge those who will give it one more try…..and those who really are at the end of their tether & need a change.

Thankfully these days we have so many drugs for our doctors to choose from….altho RA is not to be taken lightly……we are so much more fortunate than those diagnosed even 10 years ago.

[Hidden in reply to AgedCrone]

I know! All those things that can be tackled with an honest open sensible reasonable grown up conversation. 👍🏻

[matazz in reply to Hidden]

I absolutely totally agree with you gif1986 people don't realise that if you cannot tolerate the side effects you can stop the medication rheumatology have given you but always speak to the specialist they understand don't get into the position you have so sorry you have ended up in pain I was the same felt a little silly when I said something wasn't right ,even ungrateful as these people were trying to help me but they do understand we still have to live our lives and feel as normal as possible xx

[Hidden in reply to matazz]

Definitely lesson learnt. And grateful to have a very good rheumatology team, I know not everyone is so lucky.Hope you are doing ok x

[helixhelix]

There are so many drugs now that you have options! Talk to your medical team and explain that you can’t cope any more.

[Carolsos]

Yes I totally agree with you, but speak to your team. I informed my ra team I could not tolerate mtx any longer. I have been off it now for 3 months and the relief off not having to take it was brilliant. I am now on Humeria and I inject every other week. I have just started it and it's my 2nd injection on Monday. I am feeling in pain in my hands and fingers and shoulders. Good luck

[Madmusiclover]

Loathed the stuff. Fuzzy headed, overwhelmed and tearful. Good luck.

[bpeal1]

Please speak to your rheumatology team. I couldn't tolerate MXT but have had no issues at all with leflunomide and sulphasalazine, there are plenty of other medications to try. Unfortunately its a bit trial and error until you find the right combination for you.

[Sheila_G]

I wouldn't advise coming off it. I had a very bad ezperience after being off mxt for 8 weeks. I was pretty much bedridden and in so much pain I thought I was dying. It took quite a few weeks to get back to how I was before once I went back on it. I was in remission too when I had to stop it due to a breathing problem which turned out not to be caused by mxt.

[Feank]

Morning..yes I did after speaking to rheumy nurse. Couldn't cope with hair loss, fatigue, fuzzy brain generally not being with it any longer! What a relief...I am in a new place...I am on benepali now and never felt better....I have more confidence again and would definitely suggest you speak to someone about it. Good luck and have a great weekend x

[barbieg]

My consultant took me off my 15mg of Methotrexate because I couldn’t take folic acid , even the liquid form to counteract the side effects of the Methotrexate. It was the lactose. I was told it would take from 3 to 6 months to get out of my system and my RA is just showing it’s face after 5 months. I suffered bowel problems and not the nausea that most people seem to suffer. I’ve also had to go dairy free and gluten free so Methotrexate wasn’t the one for me. I previously took Sulfasalazine for 15yrs with no side effects which worked really well for me until year 15! We are all different , but my consultant told me I had to wait until Methotrexate was out of my system before going on to something else but definitely no more dmards.

[Jillyanne]

Hi, as far as I was concerned MTX was a absolutely awful drug and came off it quite a few years ago and now on just a biological drug .As someone said , the team have loads of different drugs that we can take but I think MTX is the cheapest and that’s what everyone is given it first .

So good luck 😉

[matazz in reply to Jillyanne]

Absolutely hit the nail on the head there its the cheapest so that's the one they try first !!

[Tkat10]

I came off it because I couldn’t stand the side effects, I was in remission and have since tried other drugs since in the following 17 years. Remember you have to live with the side effects and there are other options that you can try. Best thing I ever did, speak to the rheumatologist and nurse for support and alternatives.

[fred42]

Certainly keep your Rheumy team informed. I stopped MTX after trying it for a second time as the gastric side effects were just too much to cope with, I am now so much better and the biologic Cymzia is working well.MTX just doesn't suit everyone although it seems to work very well if you can tolerate it but you do need other medication in place is my experience.

[Dobcross1]

I had a phone consultation with Rheumatology nurse yesterday (after more than a year of no contact!). I asked to reduce MTX from 25mg to 22.5mg but she advised against it because I've only been well for 12 months and she wants me to wait another 6 months before trying to reduce. I was disappointed as I was hoping the side effects would be less with a reduced dose 😕 Maybe reducing would help you?

[Blodynhaul in reply to Dobcross1]

Hi Dobcross1, is your RA inactive, or are you having flares even on that amount of MTX? It sounds like your RA is inactive. In my experience the Rheumy should have had you on a programme of gradual reduction down to a maintenance dose of MTX of 10mg/week. I was diagnosed & monitored for 3 years by a Rheumy abroad & he was excellent in trying to optimise the level of MTX with how I was doing. In other words, don't just leave someone on a higher dose than is necessary (as the drug itself can cause so much damage too, as we know). Obviously one can't just keep changing the dose all the time either, but I think many Rheumys in the UK don't pay such close attention to trying to optimise the dose. My mother was put on MTX and 'left' on 20mg without it being reviewed (she had no flare-ups since starting it), so eventually with me with her challenging it the Doc got her reducing it, without any trouble. Also, as someone else mentioned, there's a tendency to keep people on MTX as it's relatively CHEAP. It is a pretty successful drug on the whole though - and mainly did well for me for 13 years (though the last few years had chronic nausea & really should have been moved onto a different drug sooner as it went on too long), but, to repeat, it's efficacy and optimisation should be much better monitored by the rheumy. Hope you can reduce! Good luck.

[Dobcross1 in reply to Blodynhaul]

My RA is mainly good, so I've agreed to another 6 months at 25mg but after that I will push for a reduction.

[Blodynhaul in reply to Dobcross1]

Good Luck!

[cathie]

I did and suffered quite a bit. Ok now on another medication without side effects

[smilelines]

It was terrible and I dreaded injecting it because I knew I would feel awful. On leflunimide which does not make me feel sick for half my week!!!!!!!

[Sar9]

Hey, I’m also in the same boat as you. Desperately want to come off Methotrexate as cannot deal with the side effects anymore. I haven’t done it yet, but with poor communication from the hospital, I may do it myself shortly. I’m waiting on a consultant telephone consultation next week.

Although I do take other medication which I started recently (Rinvoq) so would be a bit nervous stopping it if I didn’t have the back up of another drug…

Quite frankly nervous anyway as a relapse in symptoms of the arthritis wouldn’t be fun.

You just have to weigh it up and see what happens. There are many other drugs available out there if needed. Hopefully you have a team that is supportive and communicates well! Good luck!

[matazz]

Hi I was on mtx for a year on the tablets when I was first diagnosed I suffered awful mouth ulcers cold sores ,permanently felt sick then they changed it to sub cut injection ,that got delivered monthly these were like an eppipen so once trained I found them quite easy to use the advantage of these was that it was straight into the bloodstream not my stomach so a little less sickness but I did still feel sick because I got myself that worked up each weekly dose( needle phobia )that I couldn't tolerate these either...Go and see your rheumatologist they will have alternatives for you to try I've been on loads of different drugs, they haven't all worked but the best one I found worked well for me was leflunomide .

We are all different and all react differently to each drug but there are plenty out there to try don't suffer from side effects its a acceptable reason to want a change , good luck xx

[AJCWarrior]

Hi there

I came off methotrexate about three years ago by choice. It was prescribed as an injection alongside adalimumab however I was reluctant to take it because it is such a heavy duty toxic drug. I’m now on fortnightly injections of Tocilizumab. These should be weekly however due to a low platelet count my rheumatology nurse has suggested taking these injections every other week.

In addition though, I do embrace a holistic approach to dealing with my condition which has included removing alcohol from my diet this year. The proof is in the pudding as I’m now back out running long distance, weight training and I don’t flare anymore. In fact, I have minimal joint pain and that is only apparent if I sit on my knees for periods of time or if there’s any other weight-bearing on my wrists such as press-ups.

Some people fare well with methotrexate however I felt a general malaise whilst I was on it and I was also prone to recurrent cold sores. It didn’t suit me at all.

If I’m honest, all the medication is heavy duty and will eventually cause some side-effects which is why I think it’s so important to look at other ways of supporting your body’s healing. That’s my commitment to getting back to living my life to the full because 12 years ago when I was diagnosed it was with a very aggressive form and I was in a really bad way for a few years.

It’s not everybody’s cup of tea removing certain foods from the diet and embracing a holistic approach however it’s worked for me and has now given me the opportunity of returning to a role in emergency services which I had to give up 12 years ago.

I will add that there’s so many different drugs out there to treat this condition that go for the ones that feel right for you and if you need to keep changing because they don’t feel right then that is absolutely fine.

Good luck with everything.

[Durrell in reply to AJCWarrior]

Lovely to read your post as I’m like you following the natural route, I’m determined to get off all meds in the future but I know it can’t happen overnight, but I’m doing just fine & never felt better, so onwards as like you I find these drugs very concerning indeed, it’s our bodies & only we can make those decisions but I have always discussed it with my Rheumy, who thankfully has been incredibly supportive & keeping me under his radar of which I extremely grateful for.. it was lovely to read your post, so positive & inspirational, thank you for sharing...

[Blodynhaul in reply to Durrell]

May I ask what diet/ natural route you are taking? I'm considering that route too. Thanks Durrell

[Durrell in reply to Blodynhaul]

Hi thank you for your interest!! I started with cold showers & sea swimming, re Wim Hoff protocol/references to inflammation etc, these have helped calm my nervous system, plus the breathing technique which I do daily..... 2 yrs ago I contacted the Margaret Hills clinic & booked an hours consultation with a nutritionist, as I’d been following her protocol but like you I was finding lots of conflicting info, this was a great start as it got me on supplements, which have all been soooo beneficial... after a lot of research (YouTube dr Berg 🙏🏻) Mark Hyman I started into functional medicine, I am lucky to have a local gp who is also a functional medicine practitioner, I have gathered all the info, tried fod map/elimination diet as the real issue is our gut so we heal from the inside out!! It is a lot to take in, I have taken 2 yrs to get this far, still a way to go, slowly but surely, I have also looked into Dr Grundy re lectins, extremely interesting read.... basically now I’m on the keto lifestyle with intermittent fasting, not yet off meds but I’m in the right direction.., I wish you all the very best, nice to be in touch & hope this is helpful..

Really worth an hour of your time Dr Pradis Jamandas - fasting for survival (YouTube)

[Blodynhaul in reply to Durrell]

Thanks so much Durrell

[Blodynhaul in reply to AJCWarrior]

May I ask what foods you have removed & more about your diet & healthy living? Great it's helping you. I'm leaning towards trying it. ( I was on MTX for about 13 years & very nauseous the last few years & it kept affecting liver. Then was on Leflunamide for about 7 years - did well on that, but it stopped working beginning of this year. Now done 8 weeks on Adalimumab injections, but not working yet and in very bad way. Considering looking at my diet to cut out foods that increase inflammation. Have looked at all sorts online and they vary, so just interested in what you do. Luckily stopped alcohol when on MTX, Thanks for you very helpful post,

[AgedCrone]

Not a good idea…why not speak to your rheumy team & explain exactly why you want to stop,& ask for an alternative drug? We have all come to the end of our tether with certain drugs …but if you have RA you do need something to control it….so pick up the phone and if you can’t get a F2F appointment……ask your rheumy nurse to speak to your Rheumatologists to prescribe another Dmard.

I know we would all love to stop medication…but the sad fact is….without it we could end up in a far worse place in the long run.

[Angels54]

Hi I came off it as it didn’t work for me , I have developed a lung problem since then , could be coincidence, not for me .

[Blackwitch]

I took the tablets when I was first diagnosed then they swapped me around. More recently I went back onto injections, felt sick and my hair started to fall out. I’m pleased not to be wasting so much plastic though. xx

[Pink006]

Hi, I came off Methotrexate for 6 mths approximately 9 years ago because I was worried about taking medications. I experienced a flare up in my right middle finger and it never went down. That joint is now very enlarged compared to the others and means I avoid wearing rings on that hand so people's attention aren't drawn to it. I went back on Methotrexate and haven't experienced the side effects that a lot of people do. My specialist has now prescribed Upadacitinib a DMARD, because Methotrexate is no longer working. 100% agree to keep in touch with your Rheumatologist and GP. We are lucky that there are lots of options for us. Good luck 😊

[Ritaritis]

Hi Magnolia25 sorry to read your post. I don't seem to have had any side effects from Methotrexate. My hair has always been thin and the tiredness I and the nurse can put down to other personal ongoing issues e.g. I'm unemployed and single. Good luck and don't give up.🐕👍