Hi everyone, I hope you´re managing OK. I´m just after a bit of advice really. I´ve been taking 10 mg per week of MTX for a couple of years now, it seems to be working OK except for a flare I had a few weeks ago, but thankfully I´m feeling much better again now. It´s a big year for me, I´ll be 60 in a couple of weeks (yikes)! and it´s also our Ruby Wedding anniversary. I probably sound like a bit of al alcy here, but I wondered if anyone has ever requested they come off MTX and replace it with another drug, to be honest I want to be able to have a few drinks especially as we´re going on an all inclusive cruise!! I do enjoy a glass of wine now and again and the occasional bacardi and coke, and feel bereft at being teetotal for the last couple of years. (not completely true actually, I´ve had a sneaky drink now and again, but it showed up on my last blood test) so that put the kybosh on that !! Has anyone else come off of MTX for this reason and if so what do you take now and has it been successful? My next specialist appointment is in June, so it would be great to go and see him fully informed of any alternative drugs. Thank you for your help. Take care. xx
MTX Alternative: Hi everyone, I hope you´re managing OK... - NRAS
MTX Alternative
This is a very honest post Susiepain! I've had similar thoughts myself in the past especially as I turned 60 myself a few weeks back and the shock alone seems to merit a drink or two. But the thing is, I think if a drug is working for you then it's working ..... few of us would swap that for the sake of a drink. I honestly don't think there's a better DMARD than Mtx, might be wrong, but that's my view. There's biologics - you can drink on them, though of course excessive drinking and staying well with this disease do not go together - but I imagine you wouldn't qualify if you're doing pretty well on Mtx.
My rheumy is one who is quite understanding about the need some of us have for a few alcoholic beverages. He has always said that I can have a few glasses of wine a week. I have had raised ALT but that did seem to be due to Mtx alone in my case, not drinking at all didn't help. I think you might meet with a sympathetic response if you phoned your rheumy department, explained that you will shortly be in your prime, that it's also your wedding anniversary and that a cruise is in the offing and asked about foregoing Mtx for a short while in order to get a little bit merry occasionally. But if I were you I'd want to keep my rheumy team onside and the Mtx in my system (mostly) because nothing is more likely to mess up your 60th year on this planet than full-on RA.
There is no knowing whether other DMARD's would work as well for you or have any unwanted side effects not forgetting they can take up to 12 weeks to be effective. If you did need to go to the next stage of treatment, biologics, then they do appear to work best in conjunction with MTX. After many years of this disease if something drug wise is working best not to upset the apple cart. From my point of view after one drug no longer worked for me it took 2 years and trying various meds to get back under control. Often a rheumy nurse has a better understanding of wanting to live normally so maybe a chat with them before seeing the consultant. Farm
The other main drug that is often considered equivalent to MTX is Leflunomide and that is the same re alcohol. Basically all these drugs are tough on the liver, so you don't want to pile on the pressure by adding alcohol into the mix. Sulphasalazine also carries recommendations about avoiding alcohol, although my patient leaflet on hydroxychloroquine just says stay within alcohol guidelines.
After I'd been on MTX for a while with no problems - about a year I think - my rheumy said that I could try the occasional drink if I was careful. Everyone's different so what's ok for me may not be ok for you, but I seem to be able to cope as my blood tests have been fine. So I inject on Tuesday and have a single small glass of wine with my dinner on Fridays and Saturdays, about 100ml only and choose the lowest alcohol content wine I can. The real no-no is more than a couple of glasses at a time. And I don't always have a glass - as postie said an effective treatment for this disease is far more important to me than a drink!
I would be honest as you have here & directly ask your Consultant what's his take is on it. I think you may be pleasantly surprised if he's anything like the ones I had in Spain. I don't drink for no other reason than it just does not agree with me, one glass of wine & I'm not safe to drive & one more & I'd be sick. Anyway, if my liver results were raised I was always told to drink less even though I told them I don't drink & the stock reply was "I mean spirits not wine or beer". I think if you tell him you're not going to go daft you may be told just don't drink on MTX days or the day before you bloods if you're having it done around the time you'll be celebrating.
I hope you have a lovely birthday, ruby anniversary & enjoy your cruise.
I wasn't told not to drink by my consultant. So if I want one, I have one and have never had raised ALT levels. To be honest though I generally don't like wine any more - unless it's a really special one, and even then I find it impossible to drink more than one. The only day I definitely wouldn't drink is on methotrexate Monday but generally I wait till Thursday to have a drink. I probably have 7 units a week, so well under recommended guidelines. I think our bodies are pretty good at telling us what they want - and if mine tells me it really fancies a gin and tonic then I obey it!
You should obviously check with your consultant but I really wouldn't have thought the occasional glass of champagne would do any harm...
I think it's so personal, like you say you drink but don't have raised ALT levels. I don't drink yet I do from time to time. Mine may be due to the other meds I take having an effect on the liver so possibly yours don't? I think all we can do is be guided by our Rheumys, they know how each of their patient's bodies react & fortunately yours is one who can have a tipple or two. I equate it to the breathalyser, whilst I may be over the limit on one glass of wine you might not be on two. Enjoy it! 
I agree that our tolerance for Mtx varies somewhat as does our tolerance for alcohol while on Mtx. I don't get any noticeable side effects whatsoever from Mtx but I have had nearly 2 years of raised ALT. As it happens, I've had a liver scan and my liver is fine. But that was by no means a foregone conclusion. Liver damage happens silently and is painless up until the point at which it most certainly isn't. If I listened to what my body tells me it wants I'd be completely sozzled most days. Make that every day.
We do have to be careful, I think that conclusion is unavoidable. But Susiepain I hope your rheumy team take on board that you have some great reasons for letting your hair down a little and help you work around the restrictions.
Yes you´re absolutely right, I will ask for their advice, I would never overdo it though, Just a little drop of vino once in a while. Funnily enough when I´ve had that it satisfies me, it´s rather like the forbidden apple !! Hopefully I´ll get away with that, gotta have a bit of a life once in a while. xx
Thanks very much nomoreheels, the secret seems to be to have maybe just a little tipple now and again, but to never ever have more than that. I don`t think I would anyway cos it makes me feel so rough. We´ve been out for lunch today and I had just a small glass of dry white, which was lovely, but I won`t have any more now for a few days at least. I will leave the spirits alone though, that might be asking for trouble !! xx
I think you're wise. I've said recently that if I need to have a glass of bubbles to raise a toast it hits me so I tend to just have a tiny sip & if it's multiple toasts I put the rim to my lips & pretend to have a sip! I then give it to my h to finish off. That's another thing the longer you don't drink the more it affects you when you do!
Just been on the news about the awful coach crash over there, Erasmus students returning to Barcelona from fallas in Valencia, so sad & so young. This time of year always reminds me of Valencia & the glorious heady scent of the orange blossom coming into bloom.
That coach accident is awful, lots of young people, Spanish and foreign, so tragic. Had a couple of days of rain here in the south of Spain, but it only lasts a few days then the sun always comes out again. We´re near Granada, so the Sierra Nevada will be snow covered tomorrow. Beautiful. Take care x
Obviously as yet the news is a bit sketchy here but it's a known accident black spot, thought to be driver error but I would think it's too early to say. Nevertheless tragic.
We have friends who live in Granada & we considered an investment opportunity there (business) but the sums didn't work. Yep, you'd never know it had rained some times, miss that.
You take care too. x
Thank you everyone for your responses, they´re really helpful and encouraging. I agree with what you say though, if this drug is working for me why rock the boat! If
I´m honest I would say that when I´ve had the occasional glass of plonk I have been fine, whereas I do feel some effect from even the weakest bacardi and coke, so I think I´ve answered my own question really, occasional glass of wine but no spirits. In fact we´re going out for lunch today, so I´m gonna have a small glass of dry white. Cheers everyone! I will mention my forthcoming celebrations to my specialist when I see him in June though and see what he says. Thanks again and I hope you all stay well. xx
I'll be honest I take Leflodamide and its the same no booze. Yes I used to like a glass of wine or a gin and tonic, but I like feeling well more. Let is great and I feel totally well and full of energy. So its worth going without a glass of wine but I do drink the Carling Citrus low alcohol beer which is lovely.
Hi there ...I am 64! I came off it for 4 years and enjoyed my red wine ,made sure I did not overdo things ..I then had major stress due to my mother 's horrific death so I had flare ups .My old rheumatologist has retired shame as she supported me in not taking it but my new consultant wants me to take it .So reluctantly I do take 4 of them per week ..I still have my wine weekends only .My pharmacist said just cut down. Make sure your liver test high result is not the methotrexate!!!I would go on your cruise leave methotrexate at home enjoy your drinks relax laugh....and start again when your home !!! life is short .Keep an eye on your CRP level ..my GP said what are you doing on that ..you should only be on it if your CRP level s over 50.You cant win either way really its a disease we have to live with ,but I know if I have a few drinks and a laugh I feel better .I wish you all the best and have a good holiday .
I take 17.5 MXT and my rheumatologist said a few glasses of wine a week is fine providing I'm having the blood tests. If anything came up on those I would obviously stop. He did actually say he has some patients on MXT who drink quite heavily without serious problems so there you go. I wouldn't advise it though.
Blimey, they´re brave if they drink heavily. There´s me worrying about the occasional glass of dry white My blood tests are usually fine, it was just this once my liver seemed to have suffered, don`t know why. I hope it´s OK next time, sometimes feel like I´ve just gotta have a life !! xx
I go out to eat with relatives about every two months, when I first went on MTX i said that i liked a glass of wine with these meals and was told that should do no harm. Had no problems with my blood tests, nothing seems to show. Have been on 7.5 mg since 2006.
Thanks for that, seems a little wine now and again is OK, but stay off the spirits! I can live with that! Take care. x
You could try LDN alongside MTX combined with leaving gluten, dairy and suger. Many have found it possible to get off MTX this way.😊
Ooh that sounds interesting, thanks very much. x
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