been told to stop taking methotrexate immediately. AT... - NRAS

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been told to stop taking methotrexate immediately. ATLs gone 71,71, 89, 187 over 4 months. Gonna be painful again. What next?

sparkymac profile image
16 Replies

Just wonder how long before I can have another treatment, and how my liver will recover. Been as fit as a butcher's dog until this month.

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16 Replies
juju74 profile image
juju74

Hi there, my docs stopped my methotrexate for a while cos my liver function wasn't right, I'm back on it again now though, but injections this time round.

Julie xx

sparkymac profile image
sparkymac in reply tojuju74

thanks, found a few people gone onto injections. Got the paracetomol on stand-by.

Hope your injections work OK. Good luck

sparkymac profile image
sparkymac in reply tosparkymac

yes, found a couple of ex-workmates now on injections. They say they prefe it. Got the paracetomol handy, too. Good luck

shirlthegirl profile image
shirlthegirl

Hi I know how you are feeling, I've not started mtx yet due to my liver function, hoping to start my meds on the 10th December, once my results are in, It's the waiting time that can get you down, Hope everything go well.

Take care shirl x

sparkymac profile image
sparkymac in reply toshirlthegirl

Thank you. Hope the waiting isnt too painful. It can get like toothache sometimes,- drive you up the wall. Bite the bullet and keep smiling.

earthwitch profile image
earthwitch

What next? If you can't take DMARDs because of the effect on your liver, then really push your rheumatologist to tell you if you are eligible for anti-tnfs (and don't take no for an answer too easily). The potential with anti-tnfs is that you could get easily as good if not better results from them, as for some folk they really are miracle drugs.

So, its definitely not the end of options for you, but just the beginning, even if you might have to fight to get considered for or offered anti-tnfs. Try and get your GP to push for you to be seen by the rheumatologist as soon as possible though, so you don't have to put up with a possible flare up and deterioration now you are off the MTX. You do need to get onto new treatment quickly to avoid flaring.

sparkymac profile image
sparkymac in reply toearthwitch

Thanks. Overheard a conversation in a store recently where one party said they were trying to get their doc to prescribe the anti-tnfs. Hadnt heard the first part of the conversation, so didnt know what they were on about. Makes sense now, because they were talking about getting more pain relief as a result. May give this some serious thought. Thank you.

Paula-C profile image
Paula-C

My alt went up when I changed from MTX tablets to injection, It was 157 in Feb (no one rang to tell me and I carried on injecting). It was 201 in March, told to stop taking all drugs. Only thing I could have was paracetamols. Had two more blood test a few days apart. First one it had risen again this time to 257 a few days later it had come down to 131. I then had two more blood test done at fortnightly intervals, both came back within normal range. I am now back on MTX but at a lower rate. Had to have steroids for pain. I am afraid that the lower dose wasn't enough and I have just started Enbrel. Yours may come back down and you may be OK, hope it does.

Paula

sparkymac profile image
sparkymac in reply toPaula-C

Thanks. Its nice to know that the levels can drop fairly quickly.. Having a blood test on Monday to see what the final level is as a result of the final lot of medication. Was taking diclofenac as an anti-inflammatory for osteo with buprenorphine as a painkiller, then they added MXT for the rheumatoid arthritis. Seems they should have told me to stop the diclofenac. Can still take the buprenorphine with paracetomol backup. Could be walking on air before long. Ort climbing the wall. Good luck.

Hi. Sorry to learn that you are having this trouble with your alt. mine has been raised 3 times since I started MTX (also on Hydroxy) and each time was after I had a small glass of spirits eg g&t or whisky. It couldn't be due to alcohol could it? - you probably never touch the stuff but just in case no one has told you that alcohol increases the potential toxicity of MTX.

sparkymac profile image
sparkymac in reply to

Asked about the booze, was told no more than 6 or 8 units a week. never have more than 4 over 2 nights, when we open a bottle of wine and make it last till next night. Often share it with visiting neighbour which reduces units as well. Gonna be a dry Christmas this year, eat extra mince pies instead. Thanks.

mammyof2 profile image
mammyof2

i know how ur feeling 2 as my have been up and down like a yo-yo as last year, ive had 2 b taken off my mtx about 5 times in the year, they lowerer my dose which has helped with my alt's but not my pain!! last time i wos wiyh rheumy i got a stand in doc and i ask him about putting me onto the injections and he told me i wasnt eligable 4 them on that day because i wasnt crippled with pain!! even though i wos having 2 take days of work and trying 2 manage as a single parent! it made me really cross that he wos just judging me on that day, enough complaining from me lol, hope u can mange with ur pain , lisa x

sparkymac profile image
sparkymac in reply tomammyof2

Daft world we live in, isnt it. Like the altzheimers patients who cant have medication that will help until they get worse. Some docs should have taken up engineering or architecture or something. They dont make very good docs, and then give the profession a bad name. Hope you catch a sensible doc next visit, I know how bad the pain can be. First time I saw the rheumy, she wouldnt let me leave until I'd had a steroid injection. Mad a great difference. Good luck.

Hi Sparkymac

As the others have mentioned, sometimes this seems to be a blip and methotrexate can be reintroduced after a short break, sometimes a change in dosage may be suggested or perhaps a change in medication but there are many other options. Hopefully you will know more after your next blodo test.

In terms of getting onto the anti-TNF biological treatment, one of the criteria is having tried at least 2 of the standard medications for RA (including methotrexate) so it may be that you would need to try another drug before you will be considered for anti-TNF treatment. The second criteria looks at how active your disease using your 'disease activity score' (DAS) - you can find out more about DAS on our website: nras.org.uk/about_rheumatoi...

I hope you are able to get something sorted out soon, but methotrexate does take some time to clear from your system so hopefully your symptoms shouldn't return too quickly in this period.

Kind regards

Sarah Kate

NRAS

sparkymac profile image
sparkymac in reply to

thank you, I'll bear that in mind. Be after Christmas before I get any medication now, either back on MXT or something else. I'll just have to see. But thanks for your advice. Good luck

I know it's a pain if you hardly drink but I have been told by my GP now that my liver must be extra sensitive as it reacts to the slightest amount of units usually. I think you should avoid booze 100% and see if your liver normalises after a while. Apparently once it gets up it often takes a long time to come back down though so try and be totally dry. I have to as well and am dreading Christmas, New Year AND my 50th birthday as I long for some brandy or whisky or a nice g&t often, really love the feeling bubbly gives me but I just have to avoid it totally or my GP will write to my consultant and say I need to come off MTX because of my liver results. Tilda

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