Hey all, sorry I haven’t been around much of late, but been trying to finish a project I’ve been working on.
But I am here to pick your brains. I have been on MTX for 6 weeks now. I took 10mg for 2 weeks, 12.5mg for 1 week, and then 15mg for three doses. I take them on Thursday night at about 11pm.
This week (so after the 6th dose) on Saturday night (so 48 hours after taking them), I felt tired and went to bed early - hadn’t got as much sleep as normal the night before, so didn’t think much of it. Had felt perfectly fine up until that point. Sunday, I felt a bit tired on and off through the day. Monday, felt quite unwell and various points (sweats etc) - but perfectly ok at others. Monday night at midnight (so a full 96 hours after taking the MTX) pains in stomach and a prolonged trip to the bathroom where I got a little extra help with my attempts to lose weight, if you get my meaning.
I know from the forum that some people have had more problems with MTX as it builds up in your system. But does that pattern/timing sound like a MTX issue? My gut feeling says no, because I didn’t feel sick or have stomach issues until a whole 4 days after taking them. My stomach works on the slow side, but I don’t think it would work that slowly if something was p***ing it off? I’ve also had no sign of side effects up until after the 6th dose - not feeling tired, not feeling sick, no stomach pains etc.
So, should I just put this down to having got a bug of some kind - or should i be worried that at the same time next week, when I’m meant to be taking part in a gig, I could have to leave the stage quickly?! Anyone with knowledge of the timing of MTX side effects would be most welcome!
hi Darinfan, I have been taking 20mg of MTX for 18mth. i started on 10mg once a week then added 2.5 extra each week till i got to 20mg. i have never had any problem taking it. sometimes i think it may make me a little tired the night that i take it. but i couldn’t be sure that it is MTX or the general lack of sleep or other meds. i read so much negative stuff about MTX i think somethings lodge in my head & it could be that. i find it helps me with joints about 40-50% & it helps with skin 75-80%.If i ever have the symptoms you described it is from eating spicy foods (which i once loved) or if i have too much sugar? hope you get on with your meds in future.
Thanks. My gut instinct tells me it’s not related to the MTX. I could have understood the stomach problems had I had some inkling of them from the previous weeks of taking the MTX, whether stomach ache, or feeling sick, or something. But I’ve had nothing at all. I guess I just want to make sure that this sudden onset isn’t something that other people have had - then I can put it down to a bug or something, and not get too worried when the next dose comes around!
@darinfan Just a wild thought, I agree its prolly a bug BUT you mentioned trying to lose weight… I have learned (the hard way) that the GI effects of “sugar Alcohols” is tremendously enhanced when on MTX. Be careful of any “diet foods, candy etc” The sugar alcohols are listed under carbs in the nutritional information. It could be an explosive situation.
I guess that might apply to alcohol sugars too? I can usually drink 2 fairly small glasses of wine without problems. A couple of weeks ago I was sick as a pig the morning after 2 genuinely small glasses. I don’t think it was a ‘bad bottle’. Increasingly I fare best if I drink my sorry little weekly allowance with food and dead slowly to boot. I’ve recently built up to 20 mg of Mtx a week after a long time on 10mg.
Oh, I haven’t been trying THAT hard to lose weight, sadly. Just been trying to cut down on the snacking that had become the norm when I was on the steroids. And I don’t drink at all, so it’s certainly not that - although, oddly, the last few weeks has been the first time I’ve “fancied a drink” in years! But it’s never been something I crave, and I had antidepressants about a decade ago where alcohol wasn’t allowed, and so just didn’t drink after that.
I think I should just put it down to a bug or something dodgy I’ve eaten (although heaven knows what, as my diet is ridiculously bland). If I’d felt a bit groggy the previous weeks on MTX then I would be more keen on making the connection, but the only real effect I’ve had up to now is being on a “downer” occasionally on the Saturday (after taking it on a Thursday).
All I’ll say is that I got a delayed response from mxt twice. Once on the tablets and once on injections. Neither was copeable with. I decided and my rhuemy also decided that mxt hates me. That actually makes me very sad as mxt enhances our other drugs lots of times and that now isn’t available to me.
But talk to your rheumy about it. It was them rather me that said no more. I was all for trying to push through but they said it was unacceptable given the vigourness of the reaction. Both times were bathroom based one with my head down it and the other just not being able to get off it. Hugs.
Thanks, Poo. This hasn’t be too bad, and was short-lived - which, again, makes me think it was not MTX related. Although I’d felt rough since Saturday night, there was no indication of the stomach issue until it happened last night, and so far it hasn’t happened again. The only thing today is that I feel lighthearted, but I;ve got a bout of arthritis in my neck, and it often makes me feel that way, sadly.
I had significant gi effects as mtx built up in my system i.e. from about 6 weeks after i began. However there was never a delayed gi effect. Always started the morning after the meds
I’ve been on Mtx since October last year, was on 10mg for 6 months then increased to 15mg (for a couple of months), once while on 15mg I had a funny thing with my stomach getting sore (can’t ever remember it being sore before) and felt pretty nauseous for about an hour… it was a once off, don’t think I’d eaten anything odd, so thought maybe it was from the Mtx… might have just been an odd bug, I really don’t know, but haven’t had it happen again even since increasing Mtx to 20mg… maybe it’s just one of those things that happens occasionally, or as I say, maybe completely unrelated to the Mtx. I hope it proves to be a one thing for you too.
I’ve had delayed side effects on mtx I split my dose… like half on first day I take it then the rest the day after or even 2 days after. This seems to minimize the nausea for me.
kal, did your rheumy okay the dose splitting? I’ve just got this nagging thought at the back of my mind that it’s not a good idea, may well be wrong, but please check it out if you haven’t already.
I very much doubt they’ll want you to do that - although some people take half in the morning and half in the evening, I think.
I admit I felt rather ill last night before bed after taking the MTX, but I’d had a rough day anyway, and so it might not have anything to do with that. I keep going through phases of feeling very very hot - but I also get that with panic attacks, so who knows!
On rheumy advice I trialed split dose…two injections in 24hrs. Rheumy said potentially slightly less effective but minimal within 24hrs. Especially when weighed up against possible reduction in side effects. Didn’t help me much but for some it seems to work.
Unfortunately, the side effects over the last three weeks have got too bothersome to carry on with the tablets. I’ve had sweats/chills for around four days after taking them on a Thursday night, and so any improvement in the arthritis is being cancelled by the fact I feel crap and can’t go out anywhere. So I’ve been told not to take them next Thursday, with a move to injections the following Tuesday. I’m not sure whether injections will make much difference for something that isn’t obviously gastric-related, but we shall see.
Thanks. On the plus side, I’m not eating much, so I’m losing weight. But seeing the GP on Thursday and intend to get some steroids from him to tide me over as I can’t walk and I’m away next month!