Methotrexate intolerance : Hi guys. Hope everyone is... - NRAS

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Methotrexate intolerance

freckle71 profile image
13 Replies

Hi guys.

Hope everyone is well abs preparing for some kind of Christmas.

My question is regarding MTX

I have been injecting weekly MTX 12.5mg for the last 10 years just before I go to bed- but just recently I struggle to get to sleep with feeling nauseous and the following day struggle badly with nausea. I have had to take time off work as can’t function properly!!

I’m worried I’m becoming intolerant to it and worry about what my options will be if I have to stop.

I have a great quality of life and my condition is managed brilliantly.

Thanks in advance!! 😍

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freckle71 profile image
freckle71
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13 Replies
helixhelix profile image
helixhelix

It may well be that you just need to increase your folic acid? Or talk to your rheumy about dropping down to 10mg for a while to see if this will pass?

But don’t worry about options as there are a lot more drugs available. And if you have been well controlled on such a low dose of MTX the hydroxy/sulpha might do the same for you.

nomoreheels profile image
nomoreheels

I've also been on MTX a while, 12 years, injecting 11 of them. When I’ve needed an increase in dose above 17.5mg I get nauseous. As I take 5mg folic acid 6 days (I take it you still do too?) I’ve had anti emetic prescribed which works, it's retained in my acute meds list so I can access it when needed. I also find ginger can help too, maybe not as immediate as the tablets but it certainly helps. If it starts to become more of an issue my dose is reduced, usually I don't respond negatively but if I do get disease activity I go up the 2.5mg. I can't truthfully say I'm becoming intolerant to it, though I do think it doesn’t work as well as it did. I think it's something to discuss with your Rheumy, ask his/her take on it, or your nurse if you're not due an appointment any time soon. Maybe ask if leflunomide would be an option, either in it's own or as double therapy with a reduction in dose of your MTX.

It was because of this very reason I was advised not to take/inject my MTX at bedtime, lack of sleep because of side effects, though I know many people do so it must work for others. My Consultant considered a good nights's sleep necessary with RD, I agree!

I hope you can resolve this, it's wearing when your sleep is interrupted, you don't rest properly & that makes everything hard work.

marie66 profile image
marie66

I take iron 6 days and use an anti sickness drug to get me by, the day before and the day of my injection. I've been injecting 15mg for 6 years now and on hydroxychloroquine for 5. M x

Madmusiclover profile image
Madmusiclover

Hi! There are lots of other options. Don’t worry. Have a look at NRAS website publication on medicines. I couldn’t tolerate methotrexate at all!

Jora profile image
Jora

I should really remove Methotrexate from my profile. It worked for me but I have since developed a serious kidney disease and MTX isn’t compatible with treatment for that. Happy Christmas

bosun65 profile image
bosun65

Yes I agree with nomoreheels. I have been on MTX 8 years now I'm on 17.5mg tablets and I take 5mg Folic Acid 6 days. That cured the nausea.

premierscfc profile image
premierscfc

I was on MTX for 10 yrs with nausea always being a problem, I finally got to the point where it was making me physically sick for 36hrs post injection (25mg)

I decided I'd had enough and told the monitor nurse that I would no longer take it as it was destroying my quality of life

. That was 20 yrs ago and I only went back onto 2.5mg prescribed as my current Abatacept could not be prescribed without me taking MTX (which I do not take) with no detrimental affect on my treatment.

I hope this helps.

ps I forgot to mention that at one point I was on an anti sickness that I took 7 days a week with no benefit in the MTX symptoms.

Deeb1764 profile image
Deeb1764

I took MTX for about 4months and my fatigue just got worse each week followed by nausea and to the point working was hard going. Eventually my RA team felt it was best to change and try a different route and so did Lefl/Sulfaz then Beneali and now Barcitnob. SO worth talking to them and seeing what your options are.

swizzle12345 profile image
swizzle12345

Hi there! I found taking folic acid every day except day of injection really helped. Hope you feel better soon!

gilox profile image
gilox

I’ve always done my injection first thing in the morning, same dose as you, also have hydroxy. I have the folic acid every day except on mtx day. I have recently had a lot of indigestion but not sure if it’s anything to do with the drugs! Really hope you will get some help, speak to your rheumy team if you can. All the best & I do hope you get the help you need!

Tkat10 profile image
Tkat10

There are lots of alternatives now, if your quality of life is suffering speak to your rheumatologist and be firm. You have to live with this illness and the choice of what additional problems caused by medication you can tolerate is yours.

Linny55 profile image
Linny55

I inject 25mg once a week and take folic acid 2 days after injection (1 dose a week of each). Fortunately I got signed off from work 3 years ago as too tired to continue. Nausea not really a problem even on my high dose. Now officially an OAP but some days too out of it to do much anyway. Such joy. Happy Christmas.

Triquatra profile image
Triquatra

Hi guys! Just starting my MTX I am very nervous mostly of losing my hair my doctor made it seem like a miracle drug said I would start to feel more energetic and less inflammation I also suffer w sjogrens...has anyone felt better while taking MTX? My doses are oral 2.5mgx6 1st week and 2nd week then 3rd week4th week increases to 8 pills of 2.5 each week plus he prescribed folic tablet every day ...Thank You for any advice...

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