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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Hi there - nasty post I'm afraid. I think, after a year and a bit of taking it MTX is starting to disagree with me - I just feel nauseus all the time and over the last couple of weeks have had a couple of bout of throwing up and other (ahem) tummy trouble.  Has anyone else grown into side effects having been fine taking MTX before? I'm up to 20mg a week now. I can barely eat at the moment as I feel so yukky - although that's good for the diet! I think I'm flareing as well as I'm achey and sore in all the usual places that had been so wonderfully relieved by steroid jabs. My rheum team has taken me off MTX this week and I'm to try it again next week and see if I continue to be ill. Maybe I've just caught a bug on top of a bug but I'm so wiped out.... I just feel so fed up - it's affecting my confidence as I'm hiding away inside in case I need to dash off to throw up etc. My work is suffering as I can't make the commute, I can't look after the children (they're only 4 and 1) so my poor hubby is doing it all and my social life has all but dwindled away to nothing - I'm only 32 ad I can't bear feeling like this - it's so miserable.  Someone please tell me it'll get better! Sorry to moan. Ju x
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Sorry you're feeling so horrible, it must make you feel washed out as well. I've only taken MTX in tablet form, but I understand that if you inject it, the nausea symptoms are a lot less.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Ju,
I take 25mg of MTX weekly and have been on it for years now. I don't suffer with any side effects that I know of but about two years ago, I started having similar tummy troubles to those you are describing. My iron levels were also very low.
After many blood tests, an endoscopy and two colonoscopies I was diagnosed with inflammation of the colon and bowels as a result of the RA.
I'm not saying that this is what you will have necessarily but perhaps needs further investigation by your GP or Rheummy.
Hope it improves though because I know how horrible it is especially when you still have to prepare family meals when the last thing you want to face is food!
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
i found the higher the dose the worse the nausea, i wonder if you can take the folic acid to help?
if the MTX is working for the RA and it is making you sicky- then there are dozens of sickness and nausea relief tabs, buccastem come to mind and the GP can advise.
It might be that at 20mg the tummy is very effected but at 17.5 it is manageable.
being tied to the loo is no joke I know, but uncontrolled RA is no joke either. Have you got some steroid to tide you over until the DMARDs are sorted out?
I am 34 so I know what you mean when you feel that everyone else has a much better crack at it at your age. There are lots of organisations that can help with the children, you should ring up your local Social Services and ask for an assessment of care needs.
I have direct payments who pay someone "help me to be an independant mum" you will find that local authorities now have a duty to help support disabled parents which can include young carers schemes and access to child care.
much love
Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I would agree that you should have some blood tests to rule out other things such as anaemia or infections but I would strongly advise you to think about injecting the mtx. Have you been prescribed anti nausea tablets at all? I take Domperidone (Motillium) and they do help. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 31
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I could not take tablet form as it made my mouth ulcerated but since i have been on injection i hve had no prroblems at al.I do them myself but you can go to your surgery mine is every tuesday only once per week good luck hope this helps xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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oh cazza Im so glad you are on here- I had forgotten all about the injection version DUH!
My gran is on the injections as her tummy- well, it got awful so she couldnt tollerate the MTX at all. She injects herself and her hands are very damaged now (she is in her 80s and had RA for over 65 yrs) but she manages it really well.
she is doing very well on the MTX
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Hi Ju, sorry you're feeling so rough. Been there, done that, last February for me, I ended up in bed for a wekk, kids at same age as yours, husband off work to care for us, real mess. I did get better fast once the MTX was reduced. I got in a right tangle of meds and can't cope on more than 12.5 MTX anymore. I was also taking sulfa, nasty for me that was. Luckily my consultant basically went 'hurray, strike out 2 dmards! You can have Humira now, and it will help your immune gut as well'. That's what they call it in my case, I've got a very inflammed bowel, not yet properly diagnosed, it predates the RA but has really worsened since this all stated up. The HUmira has helped. I do get bouts when it is worse and the nausea kicks in.
It is very unfair, but sometimes you can forget it. Just not while you're sick. Eventually, somehow, having not killed us, it will make us stronger.
And I'm (terrible pun coming up here sorry sorry sorry) gutted not to see you tomorrow night, I hope you are resting as much as possible, I know how hard that is with the children. xfx
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Rank: Advanced Member Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Thank you so much everyone for your lovely replies. I'm pleased to let you know the horrible nausea has passed and my appetite is back - but then, it is 5 days since I last took the MTX! I'm still exhausted and achey so maybe it is a little flare underneath a bug?? My rheum team say I'm not to take the MTX this week, then start it again next week and see if I get ill - sounds like fun eh!
Jenni - I do take folic acid but I wonder if I'm doing it wrong....? I take my MTX on a Friday night then I have 10mg Folic Acid on Sunday morning, is the gap too long maybe...?
Meryberry - I'm sorry not to have seen you this evening too, it was just going to be far too late a night when I have to get up early for work tomorrow given how I've been feeling recently! It sounds like you and I have a lot in common!
Thanks again everyone - I really appreciate your help.
Ju x
Julie - I am anaemic too - I take iron adn vitamin c when I remember to - maybe I should set a reminder! Thanks also for the tip about the anti-sickness things, I hadn't even thought abou that!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ju,
Glad you are feeling a bit better.
I've been told with the folic acid, to leave a gap of 48hours either side of the mtx so no, you are not leaving too long a gap. I take 4 folic acid a week, are you only taking one (we all seem to vary in what we are told to take). It would be worth asking if you could increase it to help with the mtx side effects.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Ju,
Try more folic acid, it may help you feel less sicky.
Being sick is my achilles heel so I do sympathise!
I do hope and pray this is a bug and will pass.
Being young with RA is the PITS. I am so fed up at the moment I could cry!
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 48
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Hi, I have been feeling increasingly sick lately and by the evening have felt worse. I am not too bad in the morning and take my steroids then with my breakfst. I also havent taken my MXT this week and am feeling a bit better. I take a stomach protector before each meal which does help a bit. I only take one folic acid tablet a week and often wonder why people are perscribed different amounts. I also cannot take more than 15mg of MXT without feeling really rough. Hope we all get to feel better soon. Jayne 
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