Stopping mtx

Hi could anybody tell me if they've stopped mtx in the past. If yes did the symptoms of RA come back quickly or did it take a while thanks for any help 😊

[Hidden]

I stopped Mtx about 9 months ago. By then I was already on Humira so that's a bit different, obviously, from going from Mtx to no drugs at all.

Apart from raising my liver enzymes, which is why I stopped it, Mtx worked well for me up to a point i.e. it never tackled swollen joints. Since stopping it I've found that fatigue has returned - not dramatically, but enough that I definitely have to pace myself more. Initially I experienced a lot more pain in my feet too though that has been less noticeable lately. I'm pleased with what Humira does for me, though I'd prefer to be taking Mtx alongside it.

The big question is .... what, if anything, are you taking now that you're no longer on Mtx?

[Hidden in reply to Hidden]

Hi postle2 thanks for your reply, I am taking hydroxychoriquine at the moment, which went alongside the mtx, but due to a rash have to stop mtx for a few weeks, so hopefully the hydroxychloriquine will be enough, I don't know!

[14penny in reply to Hidden]

Hi just saw your post and thought i'd mention when I tried hydroxychoriquine I had a really bad reaction my skin went papery and flaked off I looked like one of the mummies in the british museum so maybe that is what is causing your rash mtx seems fine i have been takinf it for about 6 years now along with weekly injection of Humira just think everyone reacts different to medications

[Hidden in reply to 14penny]

Hi penny thanks for your reply. I never thought it could be the hydroxychloriquine, if my rash does not clear it is a possibility it is this med, maybe Rheims will look into that med if rash doesen't subside. Time will tell, keep you posted how I get on. Thanks. Lady B 😊x

[14penny in reply to Hidden]

Hi LadyB, Love to hear how you get on hope the rash goes soon - mine went really quickly as soon as I stopped the meds so I know it was that one good Luck

[pdp1134]

I dialed back from 8 tablets (2.5mg for a total of 20mg per week) to 6 tablets and some problems did start to come back after a few weeks. Eventually the liver enzyme level went back down and I resumed 8 tablets per week. Gradually, the additional symptoms dialed back to their original levels. I also take 2 x 500mg of naproxen and Tramadol 3 or 4 times a day.

[Glyn612]

Hi I came off MTX at Christmas and it took almost 3 months for symptoms to return - my consultant told me that as it had taken 3 months to work in the first place, it would take about the same amount of time to stop working. So if you're only off it for a few weeks and you're also on HCQ you should be absolutely fine.

[Annettem]

My Husband Roy stopped MTX for 3 weeks due to chest infection and needed spinal surgery. he was fine first 2 weeks RA started to reimerge on 3rd week but he's on no other meds for the RA as he had problems with HCQ. Rheumy nurse advised him that should be able to stop for few weeks without any ill effects especially when gets bad cold or infection as the MTX suppresses your immune system meaning it can be difficult to fight infections. Everyone is different but your on HCQ so should help. Reply from Glynisdyson sounds logical as MTX doesn't work immediately so when you stop it it must take a while to get out of your system too. Good luck.

[Hidden]

Thank you all for your reply' the information you all gave is really helpful for me thank you all 😊x

[Alan71]

I wish l could stop wonder what would happen

[Hidden]

Hi Alan it will all come clear in a couple of weeks I suppose, I'm only having to stop due to a rash see if it clears within a few weeks. My rheumy needs to see if it's the mtx that is causing the rash. Time will tell. But the mtx has been good apart from this rash appearing. It has my RA under control which is great. Hopefully I will be able to resume in a few weeks. Hope you are ok 😀

[Cornishrex]

I was on MTX 15mg for 16 weeks and didn't feel like it was doing anything. My rheumy suggested I just stop it and see what happened. He suspected that the initial inflammation I had (which was dampened down initially and immediately by a steroid injection) would come back within 2-3 weeks and would prove to me that I had RA and that the MTX was working in the background. I was off the MTX for 10 weeks and still felt no different (ie no worse, but equally no better in terms of the residual ache I constantly have in my feet whenever I walk around). Possibly some threatened extra aches after 10 weeks but very difficult to tell whether that was just normal "life aches" and whether I was turning into a hypochondriac.

I eventually decided to go back onto the MTX after 10 weeks off it simply because I was afraid that i might be prejudicing my position as a possible "very early RA" patient who could possibly knock it entirely on the head by hitting it hard with MTX early on. And although the MTX doesn't feel like its doing anything for me, it also isn't giving me any negative side effects either. So back on again now for 8 weeks at 20mg ......

[JamieRN]

Hi Ladyburnette 68

I stopped taking MTX a year ago as it killed my Thyroid it worked well when I was taking it but too many side effects. Also became anemic. Anyway back to your question: it was about 4-6 weeks b4 my symptoms of RA and Lupus returned. I hope you fare better than I did. Tho in 2 weeks my Thyroid was back to normal best of luck

[nomoreheels]

I've got up to 3 weeks if I've needed to withdraw it for amoxicillin. The longest I've been off it is 3 months & I was in a bad way but it's not a good comparison because I was off all my meds waiting for a Rheumy to reinstate them when we returned to the UK from living abroad. I certainly notice a difference after 2 weeks & by 3 I'm hoping the need for antibiotics has gone!

I hope it's not a reaction if MTX works for you but if it is it & it's not thought to be serious, rather a mild allergic reaction (to the injection site or a localised rash if you inject) it might be worth asking if an antihistamine might help either in tablet form or topical cream if the rash isn't extensive. Keep us updated won't you?

[Hidden]

Thanks everybody for your reply' to me having to stop mtx for a while, I just hope to I am ok and I don't flare to much. See inf rheumatoid consultant in a few weeks, I will keep you posted on how I get on. Thanks again for all your help, speak soon lady B 😊xx

[catwoman4]

Hi ladybrunette, yes twelve months ago, I decided that I was fed up feeling ill after mtx, (having been on it two years, together with hydroxychloriquine) and lowered the dose to half which worked well. My bloods had been coming back with good results so six months later I came off altogether. My consultant was ok with it and told me that if I had a flare I must go to hospital and get an injection, but am hopeful that it will be alright. Went to see a nutritionist too, and she advised on certain foods that were good, or not so good, which has been a great help

[Hidden]

Hi catwoman4 yes I've been on mtx a year and always been fine with it and my blood tests have always been good while on it. It's just rheumy advised on me stopping just for a while to see if it calms down. The advice on the good foods sounds good, what did she advise? X