The dreaded MYX! Advice needed please.: I've been on... - NRAS

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The dreaded MYX! Advice needed please.

PaulineS
PaulineS

I've been on MTX for 10 weeks now, with 6 weeks at 10mgs. I'm also on 1.5grms of sulph & 200 mgs of hydroxy.

I take my MTX on a Thurs evening, feel washed out the next day & then am usually ok. However this week I feel totally rubbish, very sick, achy all over & very tired. It doesn't help that I'm not sleeping at all well either.

I tried Bustrans patches for 10 days but these made me feel very sick & whoozy so stopped them on the rheumy's advice.

I'm usually brilliant at tolerating drugs, tramadol is fine & I was on 50 mgs of Amytriptiline with mo problems except it didn't help me sleep!

Is it likely to be the MTX making me feel so awful?

we're on holiday in 10 days time & I don't want to feel like this!

14 Replies
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Sorry you are feeling so rough. I think it probably is the MTX that is making you feel this way I'm afraid. I don't tolerate drugs very well - have always struggled with allergic responses. I was fine on MTX tablets for 6 months and was chuffed with myself about this. Then my dose was raised to 17.5 along with Hydroxy 400mg and I suddenly snapped a bit as you describe and felt awful - nauseous with a foul taste and general unwellness,

I eventually switched to injections and dropped Hydroxy in the hope that things improved. They did improve and my ESR dropped at last and I was fine for about 4 months and then the horrible side effects returned with a vengeance. Now down to 12.5 mg and doing fine again but the injections are more potent so I'm hoping this is enough for me although i'm getting aches and stiffness again.

It could be active RA otherwise? See your GP and get checked for other things perhaps just to try and clarify whether it is drug related or not. Tilda x

Thanks Tilda, I'm, seeing my GP on Friday but may email my rheumy aswell.

Hi

I was on that triple combination, first MTX, then Hydroxy and finally sulpha. Once I was on all three I started to feel sick, very tired and poor sleep. Once I stopped sulpha I was fine again. That was the culprit for me but everyone is different. The good thing is that if you stop,something the problem seems to go away quickly and hopefully in time for your holiday once you know which one to cut down or stop. Going anywhere nice?

All the best

Ronnie x

I agree with you on this Ronnie - I felt dreadful on Sulpha - but as soon as I stopped it I was fine in a couple of days.

Thanks Tilda, I'm, seeing my GP on Friday but may email my rheumy aswell.

Thanks Ronnie - it;s useful to know who other people have responded. I started of hydroxy, then sulph & now MTX.

I'm on all three, and am fine! But it took quite a while to get used to them, although I think it can take a few weeks before the effects are really felt so maybe this is just temporary blip while you get used to it? I hope so as the combination has really worked well for my RA and given me my life back. Polly

Hi, do you also take folic acid? My mtx was increased from 20mg, taking folic acid once a week to 25mg. I was feeling ill for a couple of days after taking the 25mg so they increased my folic acid to 3 times a week and that seems to be helping a little so might be worth trying that? If all else fails you can get it injected, but it doesn't always cure the sickness. x

I'm only on 5mgs of Folic acid - so will try increasing that, I guess the body excretes the bit it doesn't want so you can't overdose on it!

Right from day one on MTX my Rheumy nurse old me to take 5mg Folica Acid every day except the day I take the MTX and I have never had any nausea.......worth a try.....

Might be best to check with the rheum nurse or gp first and make sure you don't take it on same day as mtx, I take my mtx on a wed night (taking it before bed helps me too as I sleep thru any sickness feeling) then take folic (5mg too I think) on fri, sat, sun. Hope it works for you x

I was on sulph, hydroxy & mtx and it made me feel so ill so I stopped taking them before going on holiday though I thought it was the mtx causing the problem. A couple of days before coming home I started taking the sulph again but was ill within the hour so I stopped again. Soon after I had a visit to the rheumy when I told him the situation that I was taking no tablets but feeling much better. He said it would not last and I needed to take the tablets so try building up with just the sulph first then the hydroxy and finally the mtx after 4 weeks. I tried this but was being ill virtually straight away on just the sulph. I did not go back to rueumy but made the decision to try the other way round and took the mtx (10mg) on its own without the other drugs and that worked with very little side effect. I have seen the rheumy since and he agrees that if it appears to be working, increase the dose and carry on without the other tablets so all I take now is 20mg mtx + folic acid. It is not perfect but mtx seems to get blamed for a lot of problems where it could possibly be sometimes just the mix of tablets is wrong. This is my experience for what it's worth but as we keep reading on these blogs - everyone is different. Best wishes.

I so agree with you.... as I read through these questions each week it seems so many people are on a cocktail of drugs - but always think Mtx is the culprit making them feel sick. Like Elmtree I take the Mtx at bedtime and if it does have any nasty effects I sleep though them!

I take 20mg Mtx weekly (plus 5mg Folic Acid 6 times a week ) and have never felt nauseous on this combination. I think when we first go on Mtx we are given so much advise and even told we may feel nauseous that we actually expect to!! I had to come off it for a couple of months recently due to other health problems and boy am I glad I am back on it - it's a whole different ball game when all thos RA symptoms come back.

Been in touch with my rheumy, he has suggested taking Folic acid 3 times a week to see if it helps if not drop back to 7.5mgs of MTX; although I do wonder whether to drop back the sulpha?.............

Hi, I am on 25mg MTX, and take folic acid every day, which realy helps!

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