stopping MTX

[junik53]

Ihave been on MTX for about 3 years and I have been really good on them right from the start ,the only issue is nausea,quite bad at times,I have not had a flareup since being on MTX and was wondering what I would be like if I stopped them.I am due to see rheumy on 7th Feb and was going to ask to try without them for a while to see what I am like ,as any pain I do get I treat with painkillers.What does anyone think?

[Hezekiah]

Hi junik53. Sorry to hear that you have issues with nausea and MTX, but a lot of people do unfortunately. No fun for you at all. Given you have lasted for 3 years on MTX, I would suggest you discuss with your rheumatologist whether another drug might be a better option for you in the future. I'm sure you'll get many other helpful replies to this post, but perhaps there is one useful thing I can add. When I look at your post (on my pc screen), I also see a section to the right under the heading Related Posts, which shows various threads with MTX in their title. You may find it useful to take a look at some of these, and also to use the Search box (similarly on the right hand side) to search for MTX, MTX nausea, stopping MTX, as this may turn up some useful info for you.

And another thing....one of the common responses to your query may advise that RA/RD pain may relate to joint damage occurring in the absence of preventive treatment (for instance, MTX). Hence stopping taking it might allow joint damage to continue if your disease is active. HTH

All the best.

[junik53 in reply to Hezekiah]

THANKS FOR YOUR QUICK REPLY

[Hezekiah in reply to junik53]

You're welcome

[Frances_UK]

Do you take tablets or inject? There are other options to explore first to tackle the side effects, before stopping something that is working for you, like switching to injections, or lowering your dose. My folic acid was increased and that stopped side effects for me. But in principle I agree that if side effects become intolerable you have to consider whether it's worth it and discussing it with the doctor is the right way to go. It's a risk though. In my experience, stopping any drug has caused flares to hit back twice as hard.

[junik53 in reply to Frances_UK]

Im on tablets so they may suggest injections,nervous about that though

[Feank in reply to junik53]

Hi I was experiencing nausea on the tablets , most dreadful, switched to the injections...no nausea ...real improvent in my general well being , I was scared of injections...don't be...the spring loaded type are really fine! Only problem at the mo is they are in short supply in some areas. Good luck and don't be worrying.

[Hopeful1 in reply to junik53]

The current metho syringes are so easy to use. Just pinch the skin, a quick click on the automatic pen and you are done. Not like vaccine or dental syringes. No long needle or plunge. You are given a lesson by a nurse to begin with. They have made it really easy and painless. Hope this helps.

[junik53 in reply to Hopeful1]

Really helpful thanks

[Sweany in reply to junik53]

I’m on a biologic now, but was on mtx before. I didn’t think I could give myself injections, but it wasn’t as bad as I thought. (I used regular syringes.) I thought of my niece who started giving herself insulin injections when she was a child. If a kid could do it, so could I! It would be worth a try.

[dawkin_S]

Hi junik53. I got problems with nausea from methotrexate but upping my folic acid to 6 days a week has virtually eliminated that, so might be worth a try if you aren’t on that already.

[junik53 in reply to dawkin_S]

I already take Folic 6 days a week

[dawkin_S in reply to junik53]

Ah, shame that’s not working for you, sorry to hear that. Hope the injections are better - my rheumy nurse suggested them to me if the folic didn’t work. Fingers crossed!

[Hezekiah]

healthunlocked.com/nras/pos...

is one conversation you might find useful

[AgedCrone]

If you are on tablets….when do you take them?Many are helped by changing the time….or splitting the dose.

But don’t just stop them..it has been know if you stop a Dmard..then re- start it doesn’t work.

Speak to your rheumy nurse & get her input.

[Carolsos]

I stopped mtx after 6 years as seemed to stop working and I was 6 months before I got anything else, absolutely agony I was in! If you are stopping it try and hang on until you get another drug added if possible. I suffered with sickness the whole time, injections where better for sickness, but then I got a phobia of mtx injections and had to go back to tablets and felt so sick again and they stopped working. Good luck.

[nomoreheels]

Nausea is a common side effect unfortunately. Usually it's resolved with an increase in folic acid (unless you're already taking 5mg every day except MTX day).

Or, maybe if you're prescribed tablets & you take them in one go each week maybe you could maybe try taking them through the day with meals. When I first started MTX this is what my Consultant recommended so I took (my initial dose of 15mg) as 2 tablets with breakfast, lunch & evening meal. Doing this also means an increase in efficacy I believe, without risk of gastro issues, I never had nausea anyway.

Alternatively if you’re on tablets often a change to injections solves the problem as going into the blood stream it bypasses the tum. You can often start on a slightly lower dose than the equivalent dose in tablets too. When I first had an increase in dose it was one of the issues I had, resolved with an anti emetic. Of the two I’ve been prescribed one I found most effective was prochloperazine, though I believe ondansetron also works well.

I wouldn’t recommend stopping your MTX to see how you'd react as you may well find you do… negatively, but see what your Rheumy thinks of your idea. You only know if you try of course but personally I’d try every option available before considering it. For example, when I had an enforced break of 3 months it was only 3 weeks before I was made very aware that MTX works well for me.

I hope you can find an answer but if you don't there are options your Rheumy can prescribe as I'm sure you'll know.

[Mcwinst]

Morning, I have been on methotrexate for around five years and like you more recently had bad nausea. It had got to the stage I was fearful to inject myself. I have now stopped it (5 months) . I have just had a round of Rutiximab so I’m hoping that will be enough. I have not noticed any difference not taking the methotrexate other than actually feeling better with no sickness or extreme fatigue. I guess everyone is different.

[Elmo333]

Hi. Methotrexate gives me some nausea even on injections but if I eat something plain like breadsticks it can help. The worst thing for mtx nausea is to get hungry I find. The injections are so easy (I have the pen ones) and it is no problem at all for me. Worst case your dr can prescribe some anti-sickness tablets like prochlorperazine which massively helps. I, like you, often wonder about stopping drugs when things are going well but every time I stop them, I realise why I needed them in the first time! Good luck

[MorganCat]

I switched to injections in nov , I was scared stiff doing it . When I did it the first time it was a case of is that. It . It’s a tiny needle just goes into the skin .I’m concentrating on the process so much I don’t feel it . Feel much better nausea settled down , fatigue disappeared feel human . It worth looking at .

[Sheila_G]

I think that after 3 years you may need to have a discussion with your reumy nurse about maybe changing to another drug. Good luck

[smilelines]

There are other options so I hope you can change to something else. I have read that other people have felt unwell for a few days after each dose of methotrexate. This makes me really sad.

[JEM95]

I’ve been on MXT for 9 years. I inject now which is infinitely better than tablets.I do my injection just before bed so I can sleep through any side effects.

I find it also helps to drink lots of water.

I was told just because I feel good it doesn’t mean the meds are no longer needed, just that they are doing their job.

I also know from experience that drugs need adjusting from time to time.

Best talk to your Rheumy - they are the experts, but ask lots of questions too x

[junik53]

Thankyou everyone for your reply’s so helpful

[Tiverland]

Hi. I started mine Mtx 3 yr ago also Sulfasalazine. With support from my RA nurse, consultant and regular bloods over the past 12 months I have stopped Sulf. Due to fatigue and hair loss With the same support I have just started to reduce Mtx. ( 2 tablets over the next few months) This is to be done very slowly. It’s a start.I suggest you ask for the same support and reduce instead of stopping. I am afraid RA will come back with vengeance if I stop completely. I can just manage the fatigue but don’t want hair loss. They did suggest changing meds but I know Mtx works well for me. Good luck

[Amy_Lee]

I rheumy gave me the choice to stop either Arava or reduce Mtx to 2 tablets a week. I told her to decide since she knew best.

She decided to get me off Arava in Apr 2021. A month and a half later, I felt my right ankle and right thumb a bit painful so I took Arava again.

My rheumy did say that if I did feel any problem, just continued Arava immediately. I told her I did. I am not the right one to go without DMARDs though under remission since Nov 2015.

I hope you will be ok if you go without Mtx.

[Bagpuss2021]

I stopped mine quite a while ago because I didn't think it worked for me. talk about it in your February call.maybe write down some questions you want to ask, if you are anything like me I forget to ask things, and then you can't get hold of anyone in rheumatology for ages to ask what you forgot to ask before. Good luck.

[agnesmay]

I suffered terrible nausea when taking methotrexate in tablet form, I asked my rheumy nurse if I could change to taking it via injection....no problem with nausea now...

[Blodynhaul]

Hi junik53, all I can say is that I was on MTX for about 13 years and had mild nausea for a day or two per week most of that time, then the last 3 years much worse nausea nearly all the time! horrid like the body was all poisoned. Stopped MTX 2 or 3 times over those years due to liver, thought I'd be all right off it, but was kidding myself and within a few months the RA was running wild again, so went back on MTX.

Looking back, I should have been offered a different drug much earlier. I'd gone onto the MTX injections only a few months before I finally stopped, but the body was well poisoned so made no difference. But it did a good job on the whole for my RA. (I then went onto Leflunamide successfully with no side effects (no nausea like the MTX etc), but for some reason it stopped working after 7 years).

Sometimes more Folic Acid people say helps with the nausea. You could enquire about that dose too. Just beware stopping the MTX for long as your RA could rear its ugly head and make life much worse & take longer to tackle. But it's not long till your appointment, so I'd try and carry on & wait till then . Good Luck! 😁👍

[junik53]

UPDATE. I was put on the injection at 15 mg and after about 8 weeks was upped to 17.5 mg as was having a bad flare up. Have taken my 4th increased dose injection and my god have never felt so I’ll with nausea ,sickness and pain What do I do next,Please help.