Coping with methitrexate....or not!!!!!!

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dibdab
dibdab Member Posts: 1,498
edited 18. Aug 2015, 06:56 in Living with Arthritis archive
I'd appreciate some shared experiences from those of you who have taken, or continue to take methotrexate please.

I currently take meth by injection weekly (only 10mg dose) but really struggle with the side effects, nausea, tummy upsets and generally feeling lethargic and unwell......effectively it wipes me out for 24 hours of every week. I've tried taking it before bed, mid day, early morning; with food, before food, after food- just about every variation I can think of. I take folic acid 6 days of the week to try and mitigate the side effects.
Since my dose was upped from 7.5 to 10mg I've also suffered from chronic heartburn, for which the GP prescribed ranitidine and gaviscon, which helps a bit but hasn't stopped the heartburn. As a result I'm eating less fruit and salad both of which I love, but seem to aggravate the acidity.

I've now got to the point where I dread Friday meth day and simply don't know how much longer I can keep making myself do it :(:( . My options to swap meds are limited by the lung damage from bronchiectasis, so I take meth with sulphasalazine and hydroxychloroquine.

The logical part of me knows that without the drugs my RA would be so much worse, but just now every day seems to be coloured by dreading Friday arriving. I mentioned it to the rheumy nurse on the phone recently when I was struggling with symptoms, she offered a steroid injection and increasing the meth dose to damp down the RA.....needless to say I declined the increased dose and took the steroid.

I've been pondering asking your advice on here for several weeks, but it feels like a whinge so have held off, particularly as so many of you are coping with far more than me, but Friday is creeping nearer and I really could do with hearing your coping strategies....my poor hubby is understanding and sympathetic, but he already worries about all the medication I need so I don't want to unload on him any more.......last weekend was a particularly rough one and he looked permanently worried for 48 hours because I was so pale and quiet.

So, any wisdom please..............

Thanks for listening, it helps just to verbalise it.

Deb xxx

Comments

  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    Oh dear! This is not good and please, PLEASE don't apologise. The disease is bad enough without complications from the meds. I think maybe you are struggling for too long with this. It sounds as if something needs to change if possible.

    Some thoughts that come to mind:

    Are anti-tnfs contra-indicated with bronchiestasis?

    Could you reduce the meth and increase the hydroxy? (I was inadvertently left on the double starting dose of hydroxy for years with no ill effects.)

    I know I've mentioned this before but I was taken off ranitidine in favour of lansoprazole which, I believe, acts differently and was much better for me. That was subsequently changed to omeprazole during a bad spell because the optimum dose of lansop is 30mgs whereas, with omep, I could take two 20mg tabs daily. (I now just take one.)

    Maybe this, from NHS Choices, might help http://tinyurl.com/q3lzhaz
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Oh dear, just realised that I spelt methotrexate wrong and I don't know to edit it. :oops: The retired teacher in me is less than impressed.

    Thanks for your understanding SW. The anti TNF's are indeed contra indicated because of the risks of more chest infections increasing the lung damage, otherwise my current rheumy said he would have moved me on to them by now. Sadly my original consultant didn't get on top of things soon enough when the meds made me vulnerable to chest infections, hence the lung damage that I'll have for ever. I fought for a change of consultant, and the current guy is great, he sorted out a respiratory consultant and did lots of immunology tests which discovered that I lacked a specific anti body to a common cause of the infections, which was easily remedied by 2 injections....so the damage could very easily have been avoided at the outset. But that's water under the bridge, thankfully I haven't had a chest infection for almost two years now.

    I have seen one of the GP's at the practise recently about the heartburn, but she simply said it was a problem for rheumatology! The GP I prefer is recently back from a 3 month sabbatical so I may make an appointment to talk to her instead and ask about a different stomach protector.......the NHS link is useful, thank you.

    I have a rheumy appointment in early September so I'll also talk to the consultant then and ask about a change of meds, or some tinkering with the doses. I think that I mostly cope reasonably well with all the rubbish, but sometimes it gets way too overwhelming, and only those who deal with similar stuff truly understand!

    Thank you again.

    Deb xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I suspect it's time to change from the meth to summat else, but what else I have not a clue. In my time I've done tablet and injected meth, tablet leflunomide and cyclosporine but nothing helped: far too little far too late in my case. The bronchy-wotsit will affect the meds you can have but there has to be something out there, somewhere: you cannot carry on like this, can you? I remember a nurse at the GPs surgery who lost entire weekends after doing her meth on a Friday night but as Monday to Friday was always good she felt it worthwhile. It isn't for you.

    Is there any way you can get an emergency appointment with your consultant to nag everything over with him? That's the only thing I can suggest, I am sorry. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    dibdab wrote:
    I have seen one of the GP's at the practise recently about the heartburn, but she simply said it was a problem for rheumatology!

    I find that a bit odd. My GPs have always dealt with my stomach problems. Admittedly, the latter were caused by NSAIDS not DMARDS but they are the ones who have prescribed the stomach protecting meds and checked out my stomach with endoscopies. In fact they've always been very pro-active about it even when I'd have been a bit more laid back myself.

    Do your GPs and rheumatologist liaise at all about it?

    You're quite right. It's the relentless drip, drip, drip that wears one down and can make anything resembling normal life very difficult. For that reason you are excused writing out 'methotrexate' 100 times :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    I didn't even notice you misspelled methotrexate.

    I too dread my methotrexate injected dose. I was getting very bad at taking it this past spring and summer and found myself taking longer and longer to actually do it, sometimes by a couple of days. It makes me so sick, I hate it. What I do, which hasn't helped 100% but does help somewhat, is take Stemetil (Rx) one tab about fifteen minutes before the injection and then at intervals throughout the following 24hrs. It does help a lot with the nausea. The OTC anti-nausea medications didn't help much at all and it was my GP who suggested this. It might be worth a try for you?

    I'm sorry I can't help with the heartburn but gosh, your GP should be able to suggest something.

    Hope you find relief!
  • Sarahd1609
    Sarahd1609 Member Posts: 64
    edited 30. Nov -1, 00:00
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    I've been off and on methotrexate for 2years as they think it may be kicking my liver function. I've just been put back on the tablets today, although told not to take them until Friday as today is my Enbrel day. I too dread meth day as the tablets made me feel sick and plain rubbish. I was on the injections but the Dr prescribed tablets today. Injections I'm not as bad on, although I prefer the needles to the pen as that hurts and I struggle to alternate legs as I can't trip properly when reaching over. I'm sorry you're feeling so bad about it but you have helped me to realise it's not just me if that is any consolation so I sincerely thank you xxxxx
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Deb, I forgot to say the nausea was so bad, all I had to do was look at the syringe and I felt nauseated. Kind of like Pavlov's dog in the negative, I think our brains do learn to make the association. Sadly, in our cases the there is not a positive reward, at least in the short term. The nausea med has helped me with both the expected and, the actual nausea.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Oh Deb, firstly big ((( )))

    You weren't whingeing, you have a valid concern and it's not easy to make these decisions.

    I remember when I first started MTX, I felt sick as a dog. I was prescribed cyclizine which really helped. I still occasionally take it alongside my weekly dose if I'm feeling particularly queasy. I don't think gaviscon and ranitidine are strong enough to combat the side effects of a medication like MTX. Obviously your lung problems may mean some medications are not suitable but what about a proton pump inhibitor e.g. lansazprole or omeprazole? They are other things you can take to combat the side effects but obviously that's a decision in itself. I know it can be wearing to take medications to address the side effects themselves.

    Is the MTX making any difference, do you think? I only ask because my rheum said that, for people who respond to MTX, leflunomide is a good 'add on' drug or to change if side effects are not manageable - obviously this will depend on the reasons why MTX wasn't tolerable.

    Wish you all the best. We are always here, as you know.


    .
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Thank you one and all for your concern and encouragement, it does help to know that you're not alone in all this nonsense, Boomer and Sarah, sorry to hear that you have similar issues, I too procrastinate about actually using the dose.........and getting a cold or virus is almost welcome so that I have a good reason to miss it altogether. Silly I know, but I start to worry about taking my meth dose at least 24 hours before hand.

    Starburst, I think I'll be taking a visit to the GP's soon to ask about something more effective than ranitidine, I need to work out when I can get to see the GP who is most understanding, which may take a week or so. I also seem to recall a Registrar in the rheumy dept mentioning the Leflunomide as a possibility when I mentioned that I wasn't too keen on the meth side effects, so I'll have to follow that up with the consultant too, happily I have an appointment in early September so it's not too far away.

    Deb xx
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    I really do think that sorting out the stomach protection could make a major difference. I take my meth without thinking about it unless I have a cold or bug (in which case I don't take it at all). Even if my stomach's playing up a bit I know the omep will ensure it's no worse for a dose of meth. I do hope you can get this sorted. You have enough on without it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Thanks SW, I've grasped the nettle and made an appointment with the GP for early tomorrow morning, so hopefully things will improve soon.

    Deb x
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    Good for you :sunny: I know we often tell people on here that it's pointless to go to their GP with DMARD problems as that's the province of rheumatology but surely the converse also holds true? GPs must deal with far more, and varied, stomach problems than rheumatologists. I hope all goes well.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I wish you well for tomorrow and I hope the GP can help. I haven't methed today thanks to a throat stuffed with barbed wire so I won't be hopping into your pocket. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
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    Oh dear, it does sound like you are taking a lot.
    I find it odd that you are on both Sulpa & Meth. I was on both a few years ago and I was really ill.

    Eventually they took me of Sulpa and kept me on Meth.
    I have been relitively ok since then.

    I would suggesting speaking to your GP and asking them to take you off Sulpa but increase your dose of Meth.

    I don't suffer any side effects now, but I did when I first started.
    The following helped me with the sickness:

    Mints, Ginger Nuts and Diet Coke.

    Please message me if you are needing any advise Re Meth.
    I have been on it now for about 5 years in various forms, injections and now tablets.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    So just a quick update having been to see the GP.

    I'm feeling calmer and more hopeful, she listened really carefully and didn't try to hurry me out he door. The upshot is she has prescribed Omprezole (pharmacist has to order more in so I'll start it tomorrow), and also butrans patches to try and deal more effectively with the hip, ankle and shoulder pain that keeps me awake at night.

    I've grasped the nettle and done my methotrexate already, but not taken the sulphasalazine or plaquinel as the rheumy nurse suggested on meth days.

    It's raining heavily here and the ironing pile is beckoning, but I intend to resist it's call for as long as possible, maybe take a trip to the ironing shop on Monday instead! Maybe a baking day is called for, it always cheers me up, I love the smell of baking cakes, and it's lovely to see other people enjoying the results ...........squidgy banana loaf using up the over ripe fruit, and maybe a batch of scones........just had a message to say a friend is popping over, so good excuse not to iron.

    Thanks again for your concern and encouragement everyone.

    Deb xx
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    Well done! I'm sure the omep will help and, if the patches do too, so much the better. I also like your non-plans for the ironing though baking sounds every bit as energetic but whatever rocks your boat. Friends are always a good idea :D
    DebraKelly wrote:
    I would suggesting speaking to your GP and asking them to take you off Sulpa but increase your dose of Meth.

    GP's can't alter our DMARDS except as instructed by the rheumatologist.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, we're a few days on now so how are things going, or is it too early to tell? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Thanks for asking DD, I'm happy to report that the heartburn has disappeared :D . I've decided to try the pain patches next week........just so I know if there are any adverse results which new med has prompted it. Also we have a pretty full on week with a trip to Glasgow tomorrow/Thursday and my sister's wedding on Saturday so I don't want to risk being spaced out this week :oops: .

    I have to admit to being frustrated that the GP I consulted a few weeks ago didn't deal with the heartburn at the time but just referred me to rheumy dept.......... but grateful that the other was on the ball and sympathetic. I now await Friday's meth dose to see if the Lanzeprozole helps at all.