Deteriorated on this mx drug!
I have R.A. I've been on methotrexate for over 2 year... - NRAS
I have R.A. I've been on methotrexate for over 2 years now and want to stop taking it because the side effects have become so bad it's unacc
Written by
jayneperry1
To view profiles and participate in discussions please or .
Read more about...
9 Replies
•
Have you spoken to your rheumy team Jayne? If you don’t tell them how it’s making you feel then they will assume you’re ok 😊
jayneperry1 I went through this but I was all over my rheumy team as I went downhill quickly so I was taken off it after pills and injection over 6momths and now doing various tests and they will decide next course of treatment shortly.
Do speak to your team make sure they know all issues as they can then help you. MIne were superb and they made sure my local GP has been kept in the loop as not been well past few weeks.
Remember it is only a few of us who are badly affected by MTX many are in a good place on it (this is for new takers of MTX)
I was in the same place as you I tried both tablets and injections for around 5 years with dreadful side effects that ruled my life. After many discussions with the nurses and consultants I agreed to try benepali injections from the first one I knew that they were right for me. I have been on these for 3 years now and my only regret is that I didnt change earlier. I hope you find a solution very soon but I agree with Deeb2908 speak to rheumy team. Good luck
Hiya jayneperry1, welcome. MTX can be a very good med for many, myself included. It's the most commonly prescribed first DMARD but, as can happen with any other med, side effects can become problematic. If your Rheumy has attempted to reduce the dose to a therapeutic level, increased folic acid to the max (6 x 5mg weekly, not MTX day) & offered to change to injections & you still have intolerable side effects then all has been done that can be.
If you haven’t made your Rheumy aware of how you feel then please do. They're not mind readers, we need to be clear on how meds are making us feel, that applies to anything prescribed by them. If we don’t make them aware they presume we're doing ok. So in the lead up to your next appointment I'd suggest writing down all the problems you're having, that way you won't be sidetracked & should have a better outcome in explaining how things are for you.
I hope you find it helpful being here & do let us know how you get on.
What problems did you get? I can’t tolerate methotrexate. It makes me feel like my whole body is poisoned. Eventually I cannot eat. Yet when I told my rheumatologist she didn’t want to believe me! But I stopped taking it and the symptoms disappeared.
MTX is a Gold Standard treatment for RD, but there are many others. Speak to your Rheumie, tell them how you feel and ask for another treatment.
Hi ! I was diagnosed with RA 13 years ago, methotrexate was the 2nd drug I was prescribed, sulfasalazine ( forgot how to spell it) was first but gave me a rash. I’ve been on methotrexate ever since , I’ve been on as much as 8 tablets, been on injections, I’m now on 4 tablets (10mg) per week also on Benapali injections for last few years, & hydroxychloroquine, naproxen & of course folic acid. Sometimes on Thursday/Fridays I get diarrhoea which I believe is due to the Methotrexate I take on Thursdays. I try to spread them out a bit. I take 2 tablets am & 2 pm.
My RA has been well managed for the last few years. Medication for the disease can be trial & error to what suits us all as individuals.
Good luck finding what works for you. Always speak out about how medication affects you, there are a lot of options for us. Xx
I’ve been on mtx for 9 years. If the dose has been upped too much it makes me nauseous but my rheumy doctor listened and said to go back to 7 tablets weekly. You should have a telephone number to call the nurses if you have any issues to discuss what to do.
Good luck!
Apart from the nausea at anything over 10mg I got mouth ulcers ad a very painful tongue when the dose was increases to 25mg. I managed to get on Humira (biologic) 6 years ago and decrease the MTX dose to 5mg and had no problems since. MTX was not a nice drug for me and although I could deal with the nausea by experimenting with taking it at different times of the day at higher doses I was struggling to eat. Hopefully you can get on one of the biologics and significantly reduce MTX to acceptable levels. Sometimes you have to insist and not take no for an answer, although I have to say my consultant was very understanding and helpful.
