Post MTX days............: Anyone like me & hates those... - NRAS

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Post MTX days............

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Anyone like me & hates those post MTX days?!

I often feel rough for up to 3 days after taking my MTX (& I'm only on 10mgs) the next week then comes round toooooooo quickly! :(

I'm seeing my rheumy next week so hoping he might decide on either more MTX (:() or something else as I'm still in a lot of pain & discomfort - especially my knees & back!

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Rosie_rabbit profile image
Rosie_rabbit

Sorry to hear that Pauline and yes I hate my mtx days too. Like you I'm only on 10mg but can feel pretty rough at any point up to 5 days after taking it.

I started in August and the letter to my GP said to increase my dose to 15mg if no improvement. I think the steroid injection I had is finally wearing off as wrist and hand pain is starting to break through. I'm guessing this will mean I'll have to increase dose which I'm dreading as 10 is bad enough:((

I'd be interested in what others think as my impression is that if you're tolerating the mtx, which I guess I am as livers ok, then they will increase the dose til it works. If it doesn't work then I'm expecting them to keep me on the mtx and just add something else in like sulf or hydroxy as a combination is often effective if they don't work singularly. Don't know what anyone else thinks?? Rx

I'm also on Sulpha & hydroxy - I'm very sore at the moment so hope he's suggest something!

helixhelix profile image
helixhelix

How long have you both been on MTX? As in my experience the post MTX fog does get better with time. To start with it was difficult, and the first few months in particular were hard. Now it's ok. I've learnt that what suits me best it to do it last thing at night (with an early night) and then try to sleep in until 9 or so the next morning, and get up slowly so by 10.30am I'm ok. A bit sluggish, but functional as long as I don't have to do anything complicated. Polly

Ozzy profile image
Ozzy

After six months on mxt tablets which made me sick and showed no improvement with RA ie fingers still very swollen, my rhummy took me off them altogether, as my DAS score was over five I qualified for biologics. I think that the rhummy looks at if their is any improvement and how bad the side effects are but unfortunately this seems to take at least six months unless your blood tests show something. I never got above 10mg in tablet form or injected form, but if sickness is your problem the injectable form does bypass your stomach and stops that.

sciqueen profile image
sciqueen

Hi like Rosie I was sick for 5 days after I took oral mtx, and that was when I was on 15mg. Consultant wanted me to increase dose, so I was moved onto injectable. All the sickness, diarrhoea etc disappeared and I was ramped up to 25mg injectable. Alas my RA was not controlled (I was on mtx & hydroxy). My consultant did not think adding another traditional dmard would improve my RA, so I was put on biological as my das was still 5+. My present combination is working well.

You do get use to mtx as my current meds are mtx & enbrel. I've been on mtx for about 19 months now ( in various doses ranging from 15-25 mg), with very little side affects (touch wood). However I still hate the drug and I hate mtx days as sometimes the injection hurts :( I tolerate it because I need it!

Persevere it will get better and it takes time to work, about 12 wks and they will probably increase the dosage, if your liver results are good

Good luck Joanne x

Rosie_rabbit profile image
Rosie_rabbit

Well I have to say that last week my GP changed my folic acid dose from 1 x 5mg a week to 1 every day but mtx day. It has so far made a huge difference. I've had a few waves of nausea but nothing as horrible as it's been so Pauline it might be worth trying if you haven't already?

It is too soon to tell for me if mtx is working and I have already asked for injections but they are currently reluctant to use them , think its a cost thing. If the nausea doesn't settle I will continue to push for them.

As far as biologics go and all the new drugs I don't think that my RA is severe enough to qualify for them, which is good that my RA isn't too bad but not good that I can't benefit from the better drugs out there.

Anyway, good luck Pauline keep popping those pills and try and stay well Rx

Joeyrabbit profile image
Joeyrabbit

I was started on 25mg injectable from the start. I take it on Sat evenings before I go to bed. I have been finding more and more that by Wednesday and Thursday, I am at my worst regarding light headedness and difficulty focusing. It is really annoying. Spoke with my Rheumy and she said that maybe it had nothing to do with the medication. So I checked with my GP, and everything else is fine. It has been close to 3 months now. The pain HAS gotten much better though. I am going to try taking only 20mg for the next few weeks, and see if that helps. It is so difficult for me to know if this side effect is significant enough to go off the medication and try something else. Or, given time, this will get better.

I've been on MTX since April - I hadn't realised that it was that long!

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