How do others cope with Methotrexate nausea?

I have been on MTX injections for months with no real problems till recently. Now I feel sick all the time, day in, day out and it's getting worse. Anyone got any suggestions?

[Hidden]

hi phoebe

I would speak to your RA nurse about this as they might be able to prescribe an anti sickness , have they increased your dose ? try flat lemonade that some times helps .

hope you get better soon

Kate

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Are you taking a stomach protector and folic acid? I find if I forget any of those it's worse. It also got worse when I got the RA under control, and it was almost like it became to high a dose, but it is subsiding again. Injection might be the answer like Kate says speak to RA nurse.

Julie xx

[Hidden]

The build up of the injections might be too powerful for you; more gets into your bloodstream when injected and sometimes a smaller dose is needed. It can take a few months for the full effects to be felt. As Julie says folic acid is important as it does help to reduce the side effects. Ginger biscuits are also good!!

Definitely worth contacting your RA nurse for advice. Hope things settle soon,

Lyn x

[LavendarLady]

Hi Phoebe. I was put onto the injections because of the sickness and nausea caused by the tablets. Did have a few weeks of nausea once I started taking the injections but that has now stopped. At the same time, my Rheumy increased my folic acid to 6 days a week which does seem to make a difference. (You don't take folic acid on MTX days). Also the GP gave me some anti sickness tablets which also helped enormously. I agree flat lemonade is a good remedy as is flat coca cola. Also ginger in any form either biscuits or drinks. I drink Ginger Beer which helps. I wonder if you are on too high a dose of MTX - worth checking with your consultant. My GP also prescribed Lanzaprazole to protect my stomach which I only need to take now if I have had a heavy run of Nurofen and my tum is a bit upset. Hope you feel better soon. LavendarLady

[englishmama0]

I often have some mint tea, or ginger. Althought I'm on the highest dose, I don't get nausia every week, but when I do it's awful.... Hang in there, and hope it gets better. Pam

[Hidden]

Thank you so much for all your helpful replies. I have just spoken to my RA nurse who recommends taking folic acid tablets 6 days a week. (I was taking them on the 3 days following my injection.) She stressed not to take them on MTX day. I still feel queasy so I am giving myself a MTX holiday for a week.

Next, off to get ginger beer and ginger biscuits.

By the way I am only on a 10mg dose of MTX. I had 15mg when I was on tablets and they made me really ill immediately.

Thanks again.

Phoebe

[DeniseMcCutch]

How much is a strong dose of methotrexate - my daughter is on 25 MG of tablets and she takes them Sat nights - she is usually nauseous and sick from Sun - Tues. She also is on folic acid but she takes these 7 days a week - interesting why she was told to take them everyday and most of you say not to take day of methotrexate. She is also on an anti nausea med - nothing seems to work. She has been throwing up most of today. We have shared this with her doctor but she does not seem to think this is form the methotrexate. Very frustrated - My daughter is 15 years old and was diagnosed with crohns and IBS this past Jan.

[nomoreheels in reply to DeniseMcCutch]

I'm not sure if you realise Denise but you've landed on the NRAS site (National Rheumatoid Arthritis Society) & whilst we are also prescribed MTX guidelines may differ between the two conditions.

I'm sorry to hear your daughter is struggling, though I don't understand why her Rheumy would say it's not from the MTX, it's well known that nausea is a common side effect & if she's being sick too maybe you need to be a little more pushy at her next appointment & insist she reconsiders your question. Many here have switched to injections & tolerated it better, particularly at higher doses, rather than going into the tum it goes straight into the bloodstream, taking the tablets may also be causing problems 're her IBS as well, has she considered that? Meantime I don't know if she's taking her dose in one go but when I was on tablets my Consultant suggested I split my dose throughout the day & took them with meals. You don't say which dose folic acid she's taking, I'm on 20mg MTX & take 5mg folic acid every day except the day I inject & have fewer side effects than I had on tablets, Rheumys generally recommend not taking it the same day as it's considered it reduces the efficacy of MTX. I know some here have as an alternative to folic acid been prescribed folinic acid (Leucovorin), has that not been suggested? Of course you could also ask if MTX is the better option for her, maybe there's something else she could prescribe, it wouldn't harm asking if there are any alternatives your daughter could try.

I know used as a DMARD injections are available up to 30mg, possibly the same for oral though I don't know the recommendations 're doses for Crohns so perhaps if you post your question on the Crohns HU site maybe they'll be able to help you (tap on My Communities on the green bar & choose + Browse Communities). Maybe writing a post (red box in the corner on the right), rather than replying on an old post would be an idea.

I hope you get this sorted, it must be miserable for her & of course you as her mum.

[hatethismed in reply to DeniseMcCutch]

My daughter has been on methotrexate for 3 weeks, and is so sick for days afterwards I don't know how she can stay on it. The nausea is unrelenting, she misses work and life in general. She is on 0.4 mL injections, folic acid 6 days a week, and Enyvio for Ulcerative Colitis. I keep hearing that the side effects will decrease with treatment --- but when? It's horrible. And just when she begins to feel better and has a good day, it's time for another injection. I hate this, I hate seeing her like this.

[nomoreheels in reply to hatethismed]

That's a high starting dose for MTX, particularly as she's gone straight onto injections. Maybe her Rheumy would consider reducing her dose, 20mg is possibly too high for her to cope with, her body seems to be saying that doesn't it?

When I started MTX it was on tablets, 15mg, but it is common to start on a lower dose to allow the system to get used to it & increase the dose according to how the patient & their disease responds. I've been on injections 6 years & most recently been increased to the same as your daughter but I didn't tolerate it too well even though it worked on the disease. I was told I could reduce it back to 17.5mg, which I have but only on the proviso I add in another DMARD if the dose didn't control me well enough & I'm pleased to say I've responded well & the side effects are so much easier. Maybe the same could be for your daughter, as I've already said a reduction in dose? It is all so personal, yes the side effects often become less the longer it's taken or at least tolerable but others just don't get on with MTX at all. It would seem any more than 17.5mg tips me over the tolerable mark!

I must point out though that I'm being treated for Rheumatoid Arthritis & doses used for your daughters conditions may differ, that's something she needs to discuss with her prescriber.

I hope she's able to contact her helpline for an urgent review to report how she's reacting & a happy medium is agreed on. Has she seen her GP about this? That may be an option if she's unable to make contact with her Rheumy team, he could contact them for advice.

[OutlawWoman in reply to nomoreheels]

Hi nomoreheels. Are you saying 0.4 ml is a high dose for a new user of MTX? My Rheumy started me on 1.0 ml so imagine my surprise to hear this. I was so sick that it ended up having almost a psychological effect on me because all I would have to do it tear open the alcohol swab and the smell alone would have me heaving! I went through that for 12 years until they took me off because of numerous life threatening infections and that was with folic acid and nausea medicine. I was recently put back on a lower dose because my vectra is showing high disease activity but new Rheumy says MTX should not be making me nauseous. But I am. And the new Rheumy wants to increase my dose and I'm Terrified. It's a miracle I survived my last bout of this awful medication and I profusely refused till I got the quality vs quantity lecture from 3 different doctors...my GP, my Rheumy and a fellow in the rheumatology department.

[nomoreheels in reply to OutlawWoman]

Hiya OW. Comparatively yes. The majority in the UK are started on tablets anyhow but it's quite normal to start on a low dose, even as low as 7.5mg, though as I said above I started on 15mg. Now whether that was determined by becoming non responsive to my initial DMARD (HCQ) after a year of positive results I'm not sure. Even so Rheumys determine the dose so it will very much depend on severity of onset if it's the first DMARD. Nausea is listed as a very common side effect so we're also prescribed 5mg folic acid to take, anything from one per week to 6 per week.

The following is a list of doses available here in ml's & mg equivalents:

1 pre-filled pen with 0.15 ml solution contains 7.5 mg methotrexate.

1 pre-filled pen with 0.20 ml solution contains 10 mg methotrexate.

1 pre-filled pen with 0.25 ml solution contains 12.5 mg methotrexate.

1 pre-filled pen with 0.30 ml solution contains 15 mg methotrexate.

1 pre-filled pen with 0.35 ml solution contains 17.5 mg methotrexate.

1 pre-filled pen with 0.40 ml solution contains 20 mg methotrexate.

1 pre-filled pen with 0.45 ml solution contains 22.5 mg methotrexate.

1 pre-filled pen with 0.50 ml solution contains 25 mg methotrexate.

1 pre-filled pen with 0.55 ml solution contains 27.5 mg methotrexate.

1 pre-filled pen with 0.60 ml solution contains 30 mg methotrexate

As you'll see 30mg is the highest dose available here to us for RD & associated conditions so you'd be wise to check that you've been dispensed the correct injection. It does beg the question though.... a lengthy period with such side effects why the dose wasn't questioned?

A tip, if it helps I always inject straight after my shower so I no longer use the alcohol swab. When I changed over to the pens from prefilled injections I found they caused stinging so considered as I was squeaky clean anyway there was no need for the swab. It,s a consideration, it may help avoid your reaction.

In 9 years of living with RD MTX has been my best med to date. Because of that, if it helps, I consider it my antidote against RD & not a nasty med, though I can understand your feelings to it given your past experience. The decider for you will be if it helps bring you under control, maybe then your concerns will be put to bed. One thing I would say is that your Rheumy should be listening to your concerns. If you're not happy increasing your dose so quickly, which is completely understandable in my view given your previous experience, say so.

I've blathered on! I hope this is helpful.

[nomoreheels in reply to OutlawWoman]

I've just had a thought, are you prescribed prefilled syringes/pens or do you have single use syringes & draw your MTX from a vial? If so & you're using 1ml = 1cc syringes then drawing up 1.0ml would equate to a dose of 25mg, still the higher end of dosing for RD but it is prescribed.

[Hidden]

Since my post from 4 years ago, my MTX has been reduced to 7.5mg from 10mg. I still take folic acid on non-MTX days. And mostly I cope ok.

If I have a bad week I miss a week, with no real problems.

(I once decided, independently, to inject every 10 days, but that got complicated!)

I have also tried drinking large amounts of water, to flush everything through quickly!

My suggestion is that she should write down all the facts and problems, ask for an urgent appointment with her Rheumatologist, and ask them for help.

In the meantime, if there is a delay, who would blame her for missing a dose. She sounds to be having a dreadful time.

(Is the GP able to refer her instantly?)

Good luck, and hope things are resolved soon.

[pinksugarmouse]

I am surprised I thought the injections were better for avoiding the nasty side effects of the mtx tablets. I felt a bit queasy on the tablet to start with and then it settled. I haven't had the injections.

It's strange that it would start now as usually the worst side effects happen when you begin on mtx. Perhaps your injections are from a different batch or company. That wouldn't necessarily change the dose but maybe the other ingredients are of different quantities.

It's not nice is it? Bad enough having RA without feeling sick all day as well. Don't put up with it. Tell your RA nurse. It might be something easily sorted, I bet you won't be the first person it's happened to.

Good Luck xx

[Scrappie54]

Try taking it at bedtime with no other meds. This helped me with nausea since I have been on it for 9 years.