bub12411 years ago

I can't tolerate mtx at 17.5 either. I get sick and my hair starts to fall out. Also get ulcers in unmentionable places! Rheumy nurse suggested I take folic acid every day apart from mtx day as apparently you can't overdose on it. Sorry can't be more help xx

sdisaac in reply to bub1242 years ago

I’m on the Metojet injections at 25mg and really feel like giving up the nausea is almost unberarable for 2 days afterwards. Told to take folic acid 5mg daily to help but just can’t stomach daily tablets. taking 10 tablets, MTX 25mg was difficult I find the injections are not much better. The nausea is still there as is the anticipation of having to take them. Now I’m being treated for sarcoidosis. Does this mean I won’t get or even realise if I have RA?

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Hidden11 years ago

That sounds horrible Tilda, reminds me of the dreadful morning noon and night sickness I had when pregnant. I know what you mean about omaprezole, it gives me constipation. Could you ask about switching to injections maybe?

Paula x

Hidden11 years ago

That's interesting thanks Bubs - guess that must mean that it's the hike in dosage then? I want to stay at this dosage if I can so will just see if I can hack it for as long as possible and hopefully I'll aclimatise. TTx

Hidden11 years ago

Yes I see my nice woman gp a week today so will ask about injections. I'm not quitting unless forced because it's been such a struggle to get up to this dosage and my thigh/ bum/ hip pain has vanished now too for a few days after 4 months of bothering me so I think it must be the MTX - have decided it's a wonder drug and am hoping the nausea is a brief interlude. Yes it is a bit like morning sickness with weird taste in my mouth but even more like travel sickness. I thought I'd got off a bit light with only weird red pimples until now! Ah well. Take care Paula. TTx

Gina_K11 years ago

Hi Til,

Greetings from Portugal & a different type keyboard! You could try Motillium - also known as loritidan I think. I am on 17.5 and feel quite tired for 36 hrs but no nausea.

Portugal is fab!!!

xxx Gina.

Hidden11 years ago

This is exactly what happened to me. I even tried those travel sick wrist bands in desperation.

If you change to injecting, you can have a much lower dose for the same result and less risk of side effects. It is something to do with by-passing the liver.

And injecting is much easier than you might imagine.

So that might be a way forward.

Mags12611 years ago

Hi Tilda, sorry to hear you're suffering with nausea and also feeling down. I too suffered with nausea on mtx orally - not initially but after a few months which was a bit odd. I tried Omeprazole which did nothing for me so was changed to mtx injections which I have been on for about 3 months now and the nausea is no more. If I were you I would certainly ask about the injections - they are easy to perform and have helped me enormously. Hope your mood brightens soon and your sickness improves.

Mags x

Hidden11 years ago

Thanks all - ugh am lying in bed feeling myself heaving as if I'm on the boat - but then the big ferry lies right underneath my bedroom window so that's probably contributing with engine noise. I had insomnia last night so hoping a good night's sleep will help. I will definitely ask about injections when I see the GP next week as can't hack too much of this. Exactly the same thing happened last week after taking it so it can't be coincidence. Night all. XX

Rockpool60 in reply to Hidden11 years ago

Hi Tilda. Sounds like you are having a terrible time. I hope the medics manage to sort it soon for you. I was alright on the Methotrexate it was the Sulphasalazine that has gone for me. Throwing up and feeling like I had a huge second helping of Christmas dinner.

Big hugs and hope you feel better soon xxx

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Hidden in reply to Rockpool6011 years ago

Oh dear re the Sulpha - I was far worse on that -got the itchiest rash all over and lumps on neck and ear as well as sickness! I wouldn't say I'm having a terrible time - just feeling rather sick constantly but I did have to quit tai chi class early yesterday because I thought I was going to pass out an be sick or both. When I got home hubby said i looked like the colour of one of our boy's dirty cream pillowcases! But it's wearing off a bit now although blues day is in full fling. But on a plus side my pain in hip/bum/thighs has gone away and my ankle is much improved so you can't have everything it seems. Thanks for the hug though - one back to you via cyberspace! TTx

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Rockpool60 in reply to Hidden11 years ago

Thank you for the cyber hug xxx

I don't think people realise how rubbish we can feel..one more ' you look really well' comment and I will be in Edinburgh High Court for murder lol...

Are you allowed to go swimming ?

take care xxxx

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Hidden in reply to Rockpool6011 years ago

Swimming? hate it I'm afraid can't bear the chlorine - a hangover from my eczema days - and it's not warm enough to swim here!

Still feeling horribly sick - wonder how long this will last? Edinburgh High Court - see you there! TTx

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Hidden11 years ago

Hi Tilda, I have never been able to tolerate methotrexate, I had nausea and really dreadful headaches, I thought I had a brain tumour! However, it is such a good drug for so many. Regarding the nausea, I find ginger really good, crystallised, stem or even a tiny bit of fresh, also some of the herbal teas with ginger. I don't know if you can take an anti nausea drug, I was given one called Buscasan, which you let melt under the inside of your top lip. These are available over the counter, so I imagine there aren't many contradictions .

Hope you get a good nights sleep, and hope you wake up tomorrow sans nausea. Take lots of care. Jennyxx

watson3 in reply to Hidden11 years ago

Hi see that you always suffered from headaches,, can you tell me what you take now?? Feel traumatic with tgd headaches this last .2weeks following increase to 20mgs

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Hidden in reply to watson311 years ago

Hi Watson, just noticed your question. I took methotrexate a number of years ago, about 2 months in, the mild migraines I already suffered from, became so severe, they would last 3 days. In the end I had a head ultrasound to check everything, and came off MTX. I have had many drugs since then, and to be honest haven't yet found one or combo, that hasn't caused unbearable side effects. Tomorrow I am starting Azathrioprine for the second time, and on its own, I keep trying, and to be honest most of us have to try a few to get it right. Wishing you very good luck finding the right drug for you, bad headaches are soooo miserable. Take care. Jenny.

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watson3 in reply to Hidden11 years ago

Thank-you Jenny . Good luck with the azothiaprin

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gazelleLOL11 years ago

Hi

I also was going to mention Ginger.

I always have a tub of crystalised Ginger handy and a couple

of lumps usually help me feel better.

Ann

Hidden11 years ago

Thanks I have some chrystalised ginger in the cupboard and will go for ginger and lemon tea this morning - horrible taste in mouth again this morning but nausea not as bad. Weird that it has affected me this way so much now having been on it for 7 months. Hope the hair doesn't start thinning more too. TTx

dapper11 years ago

i had the same problem with the nausea and tiredness ,switched to injections and found a marked difference ,i used gaviscon a lot when it was bad ,also found avoiding bread and having a mint tea instead of ordinary helped a bit ,i didnt get any relief from folic acid daily though ,

juddo3911 years ago

Hi TildaT

I'm new to this forum but read your question this morning and would like to say I increased my mtx 2 months ago from 6tablets to 8tablets(20mg) and i have always taken my dose in 2 lots 4 am and 4 evening and although I feel slightly nauseous its bearable. I only have 1 folic acid tablet next day. Hope this helps

Judith x

Hidden in reply to juddo3911 years ago

Welcome Judith - I will try and see if breaking the dose up next week makes a difference. TTx

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Hidden11 years ago

Hi Tilda,

I always envied you for not having any nausea when taking MTX, when I and so many others were suffering with the dreaded sickness. As you may recall I'm now not on MTX but when I was I found sea bands invaluable. Also Pepto Bismol was good for having a glug when I felt bad.

Really hope you get it sorted one way or another.

Love

Carolyn x

magglen11 years ago

i was OK on Methotrexate to start with and then developed uncomfortable tummy aches at night. I had to stop it and went on to Leflunomide with no problems but not much change in my RA. Eventually put on sc Etanercept weekly and my life has been transformed.... I am so much better and able to walk several miles a day. Still have mild pain in fingers, feet, shoulder, back but can put up with it

parkie11 years ago

Hi everyone, I can't tolerate MTX. I'm on Sulfasalize and Hydroxy and suffer with nausia and sickness, I've found for me, that a fizzy drink helps. I'm going to try ginger as many of you have suggested, don't really like it but will try anything if there's a chance it'll work, thank you. Take care Ann x

marti11 years ago

Hello, I'm new to this site and have been happily reading all the posts, I too suffer with the dreaded sickness but I did get a useful tip from another forum I was on, somebody suggested having an ice lolly - I must admit I was very sceptical but I tried it and it seems to work for me, I don't know why it works and it might be all in my mind but it does take away the sicky feeling,

Hidden11 years ago

Hi All - thanks so much for your responses. I have just had to return home early from my tai chi class because it was making my sore ankle tendon worse and also kept feeling as if I was going to pass out or throw up or both! I haven't of course but it is very like morning sickness and feel the need to nibble and drink lots of water little and often too.

I know Chappy - I even envied myself re the lack of nausea!

I don't have to take the extra pill because the rheumy said I had 2 options - to continue on the MTX at 15 mg which was fine with 400 mg of Hydroxy - or move up a dose on MTX as I've done. I think he felt that the raised ESR (between 50 and 62 over a month) was of enough concern that I probably should move up a dose but then the Hydroxy hasn't yet had 12 weeks required to see if it's made a difference. The only thing I would say is that the constant ache in my hips and bum has disappeared completely after about 3 months of being fairly insistent - it vanished a few days after I raised my dose to 17.5 - does this sound like coincidence or the extra tablet of MTX doing it's job really well do you think?

I was just speaking to my middle son who asked why I look like death warmed up today. I told him and he said "well on the whole you seem a hell of a lot better than you were before Christmas (before MTX) when you couldn't drive without me helping and you couldn't open doors or lift the kettle don't you think?". This has confirmed the fact that MTX has done wonders for me to date so I think I'll just try and follow all your tips re nausea and not get put off as it might settle down. I'll also see how the bloods are looking next week and speak to the GP about it as well. TTx

watson311 years ago

HI There

I to have recently increase my metho to 20mg, started to suffer from nausea and headaches also lower abdominal pain. Never had it on.the lover dose of 17.5mgs. Ice cubes helped but motilium gives better relief. Might drop back to 17.5 as hate the nausea, but headaches are worse.

cathie11 years ago

I noticed that you took mtxate before a meal. I don't know why but I always take it last thing at night. Sometimes with a digestive biscuit. And if I have any nausea it isn't too bad. I hope you sort things out with this. I get 20mg weekly.

Getting ready for migration south tomorrow.

XX

bestnana11 years ago

I am on 12.5 mg weekly and have been on it since January At the beginning I had really bad nausea and when I got up to 12.5 I had 3 weeks when i was physically sick and had to call doctor who gave me injection to stop the vomiting. MY GP contacted my rheumy as this was obviously not good. I am now taking a drug called donperidone three times a day on thursdays and again on friday(which is mtx day) This has worked a treat no more sickness or nausea just headaches now Dont you just love RA lol Hope you feel better soon

Hidden11 years ago

!Having to take more pills in order to be able to take pills sounds pretty horrible Bestnana - I almost think I'd rather have the nausea but then again being physically sick is pretty extreme.

But I guess if it works as well as it seems to on the RA then it is worth it. And I took it after my dinner last night Cathie - have tried most ways now but I always think it's probably best with food in the middle of dinner (thought I did that when I was with you?!) so it's like the veg that are good for us but we hate eating from back in the kiddy days (or perhaps that was just me that hated to eat my vegies?! ) TTx

Hidden11 years ago

Domperidone (some times available as the branded product motilium this can be purchased over the counter if needed though best speak to Gp or rhuem tram first or metoclopramide, this one is prescription only.

Hidden11 years ago

Thanks Alison. Once I've seen how the bloods are looking on the raised dose I'll ask if I can have the MTX by injection and if not will go for one of the drugs you suggest. If possible I want to avoid taking any more tablets and think I would rather inject the MTX - especially if it also means I can lower the dose and maybe avoid the bouts of the blues too that way. I've never been offered this injectable option though - maybe it costs much more - so will see what the GP says next Tuesday. TTx

cheryllynn11 years ago

I first started out using the pill form, which gave my horrible nausea. Switched to injectable, was on and off due to respiratory infections. Just a few week ago I started back on the methotrexate and started to develop nausea again. My docter has perscribed ondansetron 8 mg. I take 1 tablet 2 hours before the injection and then a second 12 hours after taking the methotrexate. This week will be the second time trying this medication. Hope it helps. I also take enbrel.

This is really a frustrating illness because a lot of people do not understand how it makes you feel. Now I don't only have the fatigue and pain, nausea decided to bother me also! Good Day Ladies!

Hidden11 years ago

Thanks for telling us your med story Cheryl. I don;t think most people realise how horrible it is to be on these drugs - never mind having RA - we pay such a high price for trying to keep the disease at bay don't we? At least I know I'm very lucky compared to many on here in that they have at least made a big difference to my RA. But when I felt this sick during pregnancies I knew it would be over and I would have the excitement of a baby to look forward to - this is just a choice between terrible pain and damaged joints or drugs that make you feel rubbish and which have potential scary toxicicity? Cor most people don't know the half of it do they?! TTx

k3let11 years ago

Moving to injections helped when my dose was increased to 20 mg . I also used Bucastem sp? when it was really bad. I unfortunately had to stop metho as after 8 years my body just had enough of it. Hope you get some relief form the nausea, it is just horrible! love and best wishes x

Hidden11 years ago

Thanks K3let. Do you think if the dose had been kept lower you would perhaps have been able to tolerate it for longer? My rheumy explained that with Hydroxy the toxicity is cumulative re eyes and I would be interested to know whether this is why I'm suddenly experiencing nausea on MTX too? What are you taking now instead of MTX? TTx

k3let11 years ago

Hi again Tilda T,

my rheumy reduced it down to 12.5 to try and control the side effects which it did but unfortunately it also resulted in it huge flare, so we had to agree to part company.

A couple of times when my liver enzymes were raised I felt really itchy and sickly too and was told that was due to toxicity.

It really is just a balancing act, bit like walking a tight rope at times!

I have had every DMRAD going over 13 years and can't take anti - inflam due to an allergy to aspirin.

I have had one failed anti tnf - enbrel and I am now another anti tnf called humira. It has worked brill for a year but it has started to lose it's way so they are going to add something else in. Goodness knows what?

Hopefully it will settle when I get a holiday. I work as a full time music teacher and it has been show week so I have being doing too much ( I am my own worst enemy ) I have noticed you are musical too. It is a great distraction from our pain isn't it? I Just get sad when I play the piano now as my hands don't work as well as they used to.

Well enough about me. Hope you feel better and ask your doc about an anti sickness tablet if it continues, it made all the difference with me. Lovely speaking with you xx

Hidden11 years ago

Hi K3let - thanks for telling me your med tale - hope they come up with something good for you next. Its great to learn you're a music teacher. How on earth do you cope with working full time teaching with RA though?

The women (about 10 of us) from my small choir sang all the 40s wartime songs at the launch of the St Magnus festival yesterday evening to a very enthusiastic gathering which was such fun that we even coped with doing two installments. Then I had an hour and it was onto the Tippet with about 180 people all in this packed hall with no air - mostly asked to stand up and sing which, as I'm short and near the back was hard going as could only just see the conductor's hand sometimes! My friends and I also struggled with a very drunk woman next to us who started shouting stuff and was really pretty wild!

Came home absolutely wiped out - everything stiff and aching madly. This morning I'm still in bed - hardly dare move! I've resolved that I won't be going to the afternoon rehearsal there today as I've got to save something for an afternoon dress rehearsal in the concert venue with the orchestra and soloists followed by the big concert. I think I will flare if I do too much today as got that burning, achy feeling in my joints. I'm learning slowly with this RA!

Got an email back from physio person yesterday saying that my rheumy says either raise folic acid to 10mg (already done that plus!) or take an emetic such as stemetil or ask GP for it in injectable form but no reduction in dosage or monitoring. So replied I'll go for last option as don't want any more pills to remember!

Have a nice weekend - its very wet here!

Tilda xxx

k3let11 years ago

Your life sounds as hectic as mine! Wonderful though that you are busy making music, it really is good for the soul! Your physio seems to have given you good advice. I remember being told to up my water intake as dehydration can make the side effects worse. If you have been singing in a warm hall you may be in need of some extra water, maybe avoid the fluids that your audience member was drinking though!!

It certainly helped with the headaches I used to get after my injection day. Also taking Folic acid every day except injection day is supposed to help. Stemetil is similar to buccastem so if you opt to try it I am sure you will get some relief. Hope the weather improves for you. If it makes you feel better we are getting drowned in the central belt of Scotland too

Have a lovely weekend too xx

janjo11 years ago

Hi there, I was unlucky from the start, in that the nausea/vomiting started as did the MTX... I needed something urgently, as due to mis-diagnosis, my RA was quite advanced, with inflammatory markers off the scale. After only a couple of doses, I was changed to 20mg injection... the nausea improved by 90%. I still occasionally need cyclizine, (an anti-emetic), but on the whole I tolerate MTX quite well - this I take alongside Humira, and I still take folic acid weekly.

My life is a long way changed in only 2 years, with all aspects of my body/movement affected. I was a Registered Nurse for 25 years, but was forced to retire much earlier than planned/hoped.

I hope you find something that works for you, as the treatment can be as bad as the disease itself.

Hidden11 years ago

Hi Jan. I'm so sorry to read that you have been so badly affected by having RA. It makes me feel lucky that I had a positive rheumatoid factor and a great GP who had a strong hunch this was RA and referred me asp and stuck with this notion even after the rheumatologist said "inconclusive" at the first meeting. It took 9 months (maybe a year longer before I felt bad enough to report to GP) but I realise I have had my RA caught relatively early and am thankful for it.

It does seem strange to me that I have only recently developed the nausea as a response to the MTX. Maybe it's connected to something else. I have my bloods taken this morning first thing and see a GP tomorrow to discuss the results, telemedicine consultation and hike in dose so if all well with the MTX monitoring results I will discuss going onto injections straight away as the thought of taking those 7 pills tomorrow is filling me with dread now I admit!

Tilda xxxx

mamabond11 years ago

Hi Tilda, I am new to this forum but I have been suffering with RA for two years now. I first started out on the MTX orally, taking 8 pills on a Friday afternoon, so I felt ill all weekend, but at least I could go to work feeling a little more human. I am now on MTX injection, I still suffer from nausea and loss of hair (yikes!!), but also I did get prescribed Cyclizine anti sickness tablet. Yes, another tablet (rattle, rattle) but at least within half an hour my sickness has gone! Just a thought!

Cass

Hidden11 years ago

Thanks Cass and welcome to this forum! I'm amazed when I find people who have got through any time with RA and not yet found this place for info and support - well done! I'm sucking my Beccanstem tablet right now then having a light tea and then my MTX tablets. So many people on here have switched to injectable MTX and yet my GP today seemed to think it quite an outlandish suggestion? She said the practice only has one other patient taking MTX by injection possibly - and she didn't really like the idea for me. I'm baffled but she says she will research it at least. TT x