changing medication : hi everyone, I’ve been on mtx... - NRAS

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changing medication

WomblingFree profile image
12 Replies

hi everyone,

I’ve been on mtx for a couple of years now and I really want to change. I’m sick of the nausea and tiredness the next day. To the point where I don’t take it for a couple of weeks because it’s nice to not have to plan my week around taking medication. I’m seeing my consultant next week and I’m going to ask to change my medication. What are the side effects of other medications?

Thanks

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12 Replies
KittyJ profile image
KittyJ

There’s too many other medications to list all the possible side effects. Bear in mind you won’t necessarily get any, this forum makes it look like lots of people get side effects because people come here for help when they don’t know what else to do. There are lots of people on our meds with no side effects getting on with their life. I think you need to wait to see what your rheumy says, and then if you change you can research the med they want to put you on.

If you want to look at what other options there are then NRAS do a publication on meds used in RA.

nras.org.uk/

Deeb1764 profile image
Deeb1764

That is like opening a can of worms as everyone reacts differently to each drug so I think many will say talk to your RA team and go from there as you wont know til you go on it as you just cant compare you with someone else. Good luck anyway

Neonkittie17 profile image
Neonkittie17

Hi WF,

Agree with Deeb. Also, there is a possibility you might feel worse with other meds’ side effects for more than one day. You just never know, but as KJ has said you may not get side effects to a med which affects another person really badly. We hear of the extreme reactions on here. If the Mtx is working well to hold RA disease activity off and your blood inflammation levels are good and you’re mobile and RA is well controlled, then it is a shame to stop Mtx, but it’s making you so miserable then you don’t want that.

You haven’t said what dose of Mtx or if it’s tablets or sub-cut. The rheumy might switch you to sub cut injections if it’s the tablets that are making you nauseous. I switched from 25mgs tabs Mtx to 20mgs sub cut when they stopped working so well after 5 years and also I had nausea too once I’d gone up to 25mgs weekly tabs, The nausea disappeared once I was on the injections. I was able to reduce the sub-cut dose too. Good luck with your appointment.

Best wishes,

Neon😺

Sheila_G profile image
Sheila_G

That's a very difficult question to answer as there are so many factors involved. Everyone is different and will react differently to any drug. The only thing I can say is that you should follow your rheumy's advice. They are the experts and want you to feel better. Lots of luck

bpeal1 profile image
bpeal1

I totally understand you wanting to stop methotrexate. I too couldn’t tolerate the side effects and found myself missing doses just to have a week off.

Unfortunately it is impossible to say what the side effects of other drugs are because 1) there are loads of other drugs to try and 2) everyone reacts so differently. I have a friend who takes methotrexate with no side effects at all but sulphasalazine put her in hospital. I take sulphasalazine with no side effects at all.

My suggestion would be to look at NRAS website before your appointment so that you have some knowledge of the options and then discuss with your rheumatologist which would be the best one to try next. nras.org.uk/information-sup...

Cal48 profile image
Cal48

I am on metho.always have it at 9 in the evening with tea and ginger biscuit . The tiredness is always there but I think this is due to RA anyway.

Garnacha profile image
Garnacha

Totally understand how you're feeling, it's horrendous trying to plan anything when you know how it affects you, I told the consultant last June I wanted my life back & couldn't tolerate the effects any longer, I'd been on both tablets & injection pen which had really helped with the pain but, I honestly couldn't stand to put up with feeling so awful for 5 - 6 days a week any longer.

I was very worried about what would / could happen if I stopped taking it, the consultant said no problem & added sulfasalazine instead of methotrexate/ metoject, for me this has worked better than methotrexate, I still feel tired occasionally & out of sorts but nothing compared to what I did.

As others have said, you'd need to discuss what alternatives are available for you, but not everyone gets the possible (not definite just possible) side effects 😘 x

Carolsos profile image
Carolsos in reply toGarnacha

You have a choice if you don't want sulfa you don't have to take it, just say no! I was on sulfa and I didn't like it and came off it but now years later my consultant said maybe we could put me back on it and was really pushing it. I said no I don't want to go back on it strenuously. He said ok. I also was mtx for 5 years nit got a phobia about the tablets and the injection and asked to come off it and was still working very well but I came of it still. So there is a choice if you don't want certain medication. It's your body?!

AgedCrone profile image
AgedCrone

Just put side effects out of your mind…there are so many reasons people react badly to RA drugs…it really is not worth worrying about them all…because then every headache or bout of nausea you get- the new med ….gets the blame.

Why have you waited so long on a drug that makes you feel so bad? Unless you contact your rheumy team to explain…they will think you are doing OK.

Try to look forward to finding your “Happy Ever After” drug…… a lot of people with RA get settled on a successful drug very quickly after changing meds…but please do tell your doctors you are not doing well on your present drugs.

Shyandretiring profile image
Shyandretiring

Hi WF

I asked the same questions to my rheumy consultant as I wanted to know if I could try another drug to control my RA.

He stated that yes the😖side effects are a downside but if it takes the crippling pain of R A away then stick with it as if you try something else and that does not work and you go back to the MTX it may not work as well 2nd time around.

I hope you find the right answer for you.

Kind regards

Shy&retiring

Larmie profile image
Larmie

Sorry you are having such a hard time with Mtx. But I agree with the others that you should check with your team first before stopping. I have been taking Mtx along with Humira and find it works very well. No nausea or tiredness. Was in terrible pain before being put on these drugs. I could hardly walk! Everyone has a different reaction to different drugs. I hope your Consultant finds the right one for you. And soon. Good luck.

Blodynhaul profile image
Blodynhaul

Hi Womble, I can only speak for myself. I was on MTX for about 13 years & looking back it did a pretty good job with my RA. I had occasional flares, but nothing massive. But, like you I had nausea the following day or two, but over the years it got worse and was permanent. In retrospect, I should have been advised to come off it much earlier, but juggled the dose and went onto the stomach injections, but of course it had poisoned the body, so no difference injecting or orally. I eventually went onto Leflunamide - and for me it was the the best as I had no side effects at all and it controlled the RA very well, but it stopped working around January 2021 for some reason. (Then had terrible year with Biologics not working & Dec 2021 finally went onto a JAK-inhibitor which worked, but some horrid side effects - can't win!).

As others have said here - it is different for everyone, so no one can predict what your experience will be with the other options. You don't mention what dose of MTX you're on & whether you take Folic Acid once a week, or 6 days a week etc (which helps with some of the nausea). Over my 13 years on MTX, I settled onto a 'maintenance' dose of 10mg/week, but as time went by that was still too much for my system & felt sick all the time. But - I did have quite a few good years on it with only some nausea the day after taking.

Wishing you all the best and hope it can all be sorted or you go onto something that agrees with you!

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