Stopped Taking Methotrexate: After months of feeling... - NRAS

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Stopped Taking Methotrexate

Mandos67
Mandos67
24 Replies

After months of feeling sick, never being out the toilet, sleepless nights and the final straw being mouth ulcers, I've decided to stop taking Methotrexate. Yes my joints are a bit sore, but gone are all those awful side effects. If I can manage this horrible disease with pain relief, I won't be taking any more of these drugs :-)

24 Replies
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Andrea_Shapiro

I don't blame you for not taking methotrexate: after 8 weeks of having this awful drug, they only just recognised my allergy to it

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Mandos67

Hi Andrea. Thank goodness I'm not the only person who feels like this about MTX. My rheumy has told me that I've to go on to injections but I'm at the moment undecided if I'm going to bother. Watch this space :-)

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Hidden
Hidden

I know it is scary but it might be a good idea to look at images and read up on the impact RA has on joints if left untreated apart from by pain medicines etc before making your decision finally?

I'm about to have dose raised to 15mgs from the present 7.5 mgs of MTX and dreading it a bit but if it keeps me mobile and helps my hands and wrists which are almost unusable off and on, then I'll balance it with impact of side effects.

Apart from my hair going a little frizzy and moulting a lot I haven't yet had any side effects but it's only been a month and if I do suffer hairloss, nausea etc then i will talk to my GP and ask to be put on a different DMARD that might not give me these side effects. I had horrible side effects on Sulpshasalazine and had to come off it whereas others tolerate it fine so we are all different in what we react to.

Have you considered that there are plenty of other drugs and you may well not have adverse effects with the others as you have had to MTX. At the end of the day it's got to be your decision but I personally found looking at pictures of RA hands quite grounding recently re MTX and other disease modifying drugs. Good luck.

Tilda x

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Trish53

Hi

I understand and agree totally with how you feel as I had to come off MTX a few weeks ago too, due to the really bad side effects which were taking over my life and my lungs! The trouble is the damage that's being done to our joints will affect us very badly in the long term, and I know that I couldn't stand being dependant on others in the future, so I have agreed with my Rheumatology nurse that I will take a break over Christmas and return in the New Year to start on Leflunomide. I understand that you don't want to go on anything else, but there may well be something out there that will help you prevent long term damage without too many side effects (we're all different in our tolerance of medication).

Also are you on any other meds at all? I've been on Sulfasalazine since last May and, although I had side effects in the beginning, I now tolerate that quite well, it's just not enough on it's own to hold the RA back, unfortunately!

Good luck with whatever you decide to do - after a break from the MTX nightmare you may, like me, decide to give something else a go. x

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julieporter

Hi

I'm really sorry that MTX has caused such terrible side effects.i totally understand your decision as i came of sulphasalezine for similar reasons but i tolerate MTX injections at 25mg.As Tilda says it really is a lottery as to which meds will suit you and i hope your rhuemy team support your decision.I really think though that the joint damage can be really destructive so think carefully about not taking anything at all.NRAS helpline can talk through options with you.

Wishing you all the best and try and have a lovely Xmas

Love Julie xxx

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essexgirl

i dont blame you either ... every week i think right im not going to take it anymore but i think i'll take one more lot and then wen ive taken it i think why did i take it .... its like that every week lol

i take salazapyrin aswell ....

to be honest it has done me well so far but its just such a horrible drug

good luck with whatever you decide to do

debs xx

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bpeal1

Please don't just manage with pain relief as this won't stop joint damage. There are plenty of other drugs out there you just need to find the right one for you.

MXT made me feel very sick too (I only put up with it for 3 months -each week it was gradually getting worse). I now take Luflunomide and sulphasalazine with very few side effects (and a lot of the time none)

Pleaded talk to your rheumy team and ask to try something else until you find what suits you.

Have a good Christmas

Becky

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Hidden
Hidden

I am sure they can find a drug that will suit you with less side effects.

I had problems with both methotrexate and sulphasalazine.,I am now on the old fashioned gold injection which took a while to give benefit x

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sciqueen

Hi

My meds mtx & plaquenil are working for me. Rheumy reckons they will work even better in the next 4 wks, but I am experiencing sickness, diarrhoea etc (hair loss), with mtx, could not go to wok with it due to the excessive sickness. Had an appt with rheumy last thursday and I am being put onto injections in the new year after the training sessions on how to inject mtx.

I don't really want to stop mtx because I am seeing the benefits, but I have also suffered terrible side affects every wk for the last 8 wks since I have been on it.

The alternative, would be to go back to the awful pain, which pain relief or nsaids was never enough to manage it.

Think really carefully before you stop all dmards. If mtx is not suitable try something else, they all have some side affects, but you may be able to tolerate another type better. Also I think mtx works better in conjuction with another dmard like plaquenil. Plaquenil has less side affects, same as mtx (no hair loss), but it only lasts up to a wk, when you first take it. For me it was 3 days and I never experienced anything else since.

Have the break, over chrimbo, think about it and recharge your batteries.

Good luck and enjoy your christmas

Take care

Sci xx

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cathie

I've been taking mtx for quite a long time now - about 8 years. And I've had my ups and downs with it, but generally after quite a long time of dashing to the loo etc etc it seems to have settled down. I mistakenly reduced the dosage once and really suffered for it. Its taken a while to settle down but I feel quite stable - the only trouble is taking those eight yellow pills on a Sunday night... that makes me feel very queasy

Happy christmas to all

Cathie XXX

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Mandos67

Since leaving this comment yesterday, I am in absolute agony. My feet feel like they belong to someone else and shouldn't be stuck to the bottom of my legs. Oh the pain! Time for some Solpadol methinks x

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Andrea_Shapiro

Please don't be too hasty in your decision. I was diagnosed allergic 18 months ago, and in the time I was on methtotrexate, I never had a good word about it, but that doesn't mean that it works for other people. Please don't abandon your meds on someone else's experience! I believe that it makes a lot of people experience nausea & deprive the body of folic acid. I personally never experienced any nausea, but it burnt my skin around my eyes and mouth. It doesn't mean that it will do that for anyone. Bear in mind about this site that we're only amateurs who try things, albeit experienced amateurs with RA.

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Chrystalbrook11

Feel better

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Mandos67

10 solpadol later and feeling fine :-)

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lorrain

hello mandol i know this is a old post but im feeling like you did when you rote this iv stopped taking methetrexate 2 weeks ago and im pretty scared iv had many of the symtoms you did pluss hairloss and im wondering how you have got on

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denvajade
denvajade
in reply to lorrain

Hi Lorrain, just wondering did you have stomach issues with methotrexate?

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Donpablo
Donpablo
in reply to denvajade

I had really bad stomach problems while I was on mtx and it gave me gastritis and damage the lining of my stomach. So I'm off Mtx until the doctor puts me back on.

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denvajade
denvajade
in reply to Donpablo

How is your stomach now?

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Donpablo
Donpablo
in reply to denvajade

A little better after 3 weeks off the mtx but I have been told I have got to stay of mtx injections for 3 months until it repairs . They tried to treat it for a year while on mtx but when I had my injections it caused stomoch problems every time.

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denvajade
denvajade
in reply to Donpablo

I developed a condition of the stomach and bowel called Dysbiosis, been off methotrexate about 3 years

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Chrystalbrook11

I had terrible issues with stomach

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lorrain

hello looking back im not sure i had so many things wrong with me its possible i did i had mouth ulcers , teeth problems, burning eyes and just before i stopped taking it i had panic attacks which iv never had them before in my life the biggy one was the hairloss i really couldnt cope with that i guess methotrxate just wasnt for me and im glad im not taking it no more looking back i really wasnt myself at all i was even paranoid im only taking hydroxychloriquine at the min and even tho iv had some pain im coping my rheumatologist said i didnt afto take methotrexate i could try something else but im to scared to at the min but guess if the pain got really bad againi would afto but for now im sticking with the hydroxy are you on the methotrexate

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14penny

I have now stopped taking methotrexate out of curiosity as I have had chronic diarrhea for the last year which my doctor kept trying to send me for a colonostomy but I never did but now I know it was the methotrexate also I was forever getting illnesses losing my voice etc now this is not happening but I am worried I might be damaging my joints as I already have two knee replacements and do not want any more damage through RA Hope this helps Anny

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