Alcohol: Hi guys, it's a question really on the... - NRAS

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Alcohol

topcat111 profile image
43 Replies

Hi guys, it's a question really on the consumption of alcohol, I am currently taking 20mg MTX weekly,hydroxy and naprosyn daily. I would like to know what the recommendations are on alcohol, it states that you can consume a few units a week, but if you don't have any for a couple of weeks would it then be ok to have quite a few drinks in one night ? I am struggling with this as I am a party person and like to go out, I don't do it every week, maybe once a month, is this reasonable or is drinking in excess once a month very bad for me? It feels very strange having to ask this question, after all what is wrong with going out and partying, but obviously I want to,know if I am doing any long term damage, or what would happen if I did? I am newly diagnosed and struggling to come to terms with giving up my high heeled shoes and not lasting the night anymore, to have to give up my once a month night out would just be so depressing! Any thoughts or advice would be great fully received ...many thanks.. Tracey xx

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Beth58 profile image
Beth58

Hi Tracey

Sorry to say but drinking excessively at any time is NOT good for anyone, think about it this way.... If you forgot to take a few doses of your meds then took them all at the same time what do you think that would do to your body??

MTX is like a lot of medications if you must drink, drink in moderation. And I speak from experience, no one told me not to drink with MTX, it was only after a night out and heavy drinking I had a very bad reaction, I stopped drinking altogether when out socially.

These days I only have a small glass of wine at night to help me sleep.

Hope this answers your question, and go easy on the alcohol it doesn't have to spoil your night out we can still have fun on soft drinks, or have one alcoholic drink then a soft drink just to water it down a little.

Beth xx

bub124 profile image
bub124

Hi Topcat,

I had this conversation with my rheumy nurse the other week. He said that anything in moderation should be ok but binge drinking was never a good idea and especially not on MTX. So I would say, sadly not. Saving up your 'units' to use on a good night out is probably not the best idea in the world. Have a word with your rheumy nurse though and see what they say. Hope this helps

xxx

topcat111 profile image
topcat111

Thanks Beth, I understand what your saying, but when I mean drinking in excess, I don't mean getting blind drunk , I mean having say 4 or 5 glasses of wine, over a period of say 6 hours, does that seem in excess? If I don't have any alcohol in between, surely that is no different than you having your 1 glass of wine every evening to help you sleep, I see it maybe as banking them up? Or do you still see this as wrong, I would never be drunk that I didn't know what I was doing! It just is not the same for me drinking only coke, I have been doing this for the last 2 months and it's not the same! Thanks for your advice tho! Tracey .xx

topcat111 profile image
topcat111

What is considered moderation tho? Xx

helixhelix profile image
helixhelix

My opinion, and this is just a personal view, is that 4 or 5 glasses of wine is too much at one time. I agree with Beth, that this is really not a good idea. There is a very good reason for this if you're taking MTX and that's because alcohol and MTX interact together and make the effects on your liver much stronger. You may well not notice, but your liver probably will. And the quantity does make a difference, as far as your liver concerned then dealing with 4 glasses is a hell of a lot more difficult than 1. After all, many people who end up with cirrhosis of the liver don't have any symptoms until it's pretty far gone, so I really wouldn't judge this on feeling ok. One glass sf wine at a time is far easier for your body to deal with. I now drink one glass a week, and maybe two if I'm really going wild. To start with I found it tough, but I'm used to it now so can still enjoy a night out. I stick to things like Schweppes with a slice of lemon, and try to convince myself I'm drinking gin.

I think the more formal "moderate" drinking is no more than 14 units a week for people who are not on MTX. Which is about a big glass of wine a day max. Of course it's your choice, but please do think hard about this. Polly

Beth58 profile image
Beth58

This sort of question is always difficult even for the professionals to answer, what may be extremely bad for one person doesn't affect another.

Perhaps we have to work out for ourselves by trial and error what's an ok level for us as individuals, sadly the error could have serious effects on our liver when we take the medications into consideration.

Whatever you decide enjoy your evening out.

Beth xx

topcat111 profile image
topcat111

Thanks guys for your answers, probably deep down I know your right, it's just another thing to feel sad about :( xx

A couple of thoughts. Make sure you have had lots to eat before you drink alcohol as that slows it down and is less of a shock to your liver.

Also, if you like wine, learn to love spritzers. And if you like gin and tonic, have just tonic mostly.

It's a bit of a learning curve you are on. But you will get used to it and learn your limits. Have a look at your blood test results (have you got a MTX record book?) The ALT/AST results are the ones to watch to check your liver health.

My consultant said it is fine to have small amounts regularly, but bingeing is a really bad idea.

As far as sadness is concerned, the loss of my high heels was much more upsetting for me than cutting down on the wine! It still gets to me now after 20 years. I spend most of my life in jeans and on the odd posh occasion I wear full length dresses.

Anyway, good luck and take care of yourself.

topcat111 profile image
topcat111

Thank you Phoebe for your advice, and yes it pains me deeply not to wear my killer heels, I'm only hoping once the medication stars to work things improve for me, thanks again..Tracey .xx

Hi Tracey - just to confirm what everyone is saying here (sorry to be depressing but..). I have had two quite alcoholic weeks since MTX - one at New Year when we were first footed by some people when I was in the midst of a rotten cold - and they brought malt whisky and I felt I could refuse a dram or two and then a glass of bubbly at home to bring in the New Year. My GP phoned to ask me to reduce my dose of MTX the following week because my liver was raised on all counts. Then I flared with the lowered dose so felt it the hard way but GP said it was probably just the rise in dose. So I hoped it was and when I moved up to 17.5 about four months later (it took me ages for liver to normalise) I went on a jolly with my choir and had a few g&ts and then some bubbly (rather a lot as it was our wedding anniversary and Easter day combined) and sure enough GP phoned again and said go down a dose liver is raised on all counts.

I haven't touched a drop since because I don't want to flare up from lowering doses again. And today I had my first blood results since getting back up to 17.5 with no booze at all and they are fine. I conclude, with some sadness, that my liver just can't hack the drugs and booze now. The good news is that the MTX seems to work really well for me re my joints and that means I can now dance the night away which is more of a source of pleasure than the odd booze filled night so it's worth it! Tilda x

I've read that the recommend maximum alcohol consumption for someone on mthx is 4 units per week for a lady this equals 500mls off wine that's not even a bottle a week 125ml glass is one unit off most wines I believe but this can be more depending on strength off wine

I'm 34 and pre ra going out drinking 2 bottles was a normal Saturday night now I still go out when I am out now I drink 2 small glasses and have soft drinks inbetween.

You may think that you Are missing out but you make your own entertainment and you won't miss it after a while.

Enjoy your nite out x x

topcat111 profile image
topcat111

Ok thanks a lot guys, I appreciate you all taking the time to answer and I have taken on board everything you have said, it doesn't take away the sad feeling that I have lost another part of my life to RA, at the moment I am newly diagnosed and quite resentful of this illness, maybe,like you guys,in time I will get used to this new way of living, at the moment I am saddened at all the things I have had to give up. Trust me, it's been a lot, as I was a very sporty person. My life ahead with RA just seems worlds apart from the life I am used to living! :( thanks again your advice is very helpful. Tracey. Xx

nottsexsportfanatic profile image
nottsexsportfanatic in reply to topcat111

Hi Tracey - like you, I am newly diagnosed and am struggling coming to terms with this illness and what it means to my everyday life. I was a kickboxing instructor 4 nights a week, then on my days off I would go cycling, jogging, swimming or the gym with my boyfriend - so I too feel the excruciating pain of giving up my life in sport.

On the alcohol side I watched "Embarrassing Bodies" on channel 4 last night - talking about the increase in liver cirrhosis (scary stuff, but explained well) - worth watching as they briefly discuss the myth of watering down between alcoholic drinks or how long it takes you to drink them etc.

Due to my sports background I don't tend to drink much if anything anyway, but having started MTX 12 weeks ago my ALT results are in the red and they have increased the MTX now to 25mg which will probably worsen my liver functions further (every clinic visit my rheumy asks if I drink, don't think she believes me when I say no)...... but I am due to go on holiday shortly and was looking forward to a nice cocktail or two during the evenings entertainment (alcohol free wine etc not so easy to buy in bars abroad).

Life with RA truly sucks dont it :-( - but I try to take comfort from the fact that MTX and no alcohol = less pain, ability to walk again, hold my own glass and feed myself (that is my reality check for now).

Hope u find ways to enjoy ur nights out again real soon.

Take Care

Tina

BossyBoots profile image
BossyBoots

Having RA means life becomes a compromise. It isn't easy, in fact it is downright difficult. Even after 20 years I resent the intrusion it has had in my life. However you learn to adapt and the best piece of advice I can offer you is work round it, don't fight RA.

Wolfdancer profile image
Wolfdancer

The big thing is that Methotrexate affects out livers. You add anything else into the mix and that can only make things worse.

I had rather 'boozy' month last July (it was my birthday) and my ALT results went haywire. The doc thought it was down to all the 'partying'..... the result was I rarely drink at all now and my ALT levels are normal.

My pharmacy prints avoid alcohol on both the Meth and Leflumide lables.

Talk to your Doc he/she might give you some answers.

flowerpot profile image
flowerpot

hi tracey, just a thought, what i have is alcohol free beer or wine, taste okish and usually looks the same colour, but for me it still feels like im taking part, hope this will help you, sue

cazh profile image
cazh

Hi Tracey,

I've been on methotrexate now for 8 weeks and found the alcohol issue really hard to accept as I love my wine. My consultant said no more than 2 units a week, but when I saw my rheumy nurse she said no more than 2 units a day. Confusing eh? I do feel it's probably safer to err on the side of caution and have been trying to drink alcohol only at weekends and then no more than 1 or 2 units at a time. What I've found really useful was to get hold of a little alcohol unit measuring cup (free from the drinkaware site), it measures units according to the different strengths, that way I know I'm not overdoing it. It can be scary how many units are in a 13% bottle of wine! Also through trial and error, have found some fairly acceptable low alcohol and alcohol free wines which as others have said make you feel like you're still joining in.

Good luck and hope you still enjoy the partying.

Caroline.

topcat111 profile image
topcat111

Thanks guys you are all very understanding , it's such a shame that our lives are suddenly turned upside down and I mean suddenly, I woke up one morning with RA, I swear I never went to bed with it!! I think that is what is hardest to deal with, i have not had a chance to become accustomed to the idea . I love partying and drinking alcohol and I have not got used to the idea that I have to make vast changes in my life!! I expect in time I will...I will let you know. Thank you all again!!! Xx

jaqi1 profile image
jaqi1

hi all just a quick question about drinking alcohol and mtx. if your blood tests come back ok does that mean your liver is ok?

topcat111 profile image
topcat111

Out of interest what is a healthy ALT reading, I don't understand any of the levels, so wouldn't know what to look out for anyway? My level last reading was 9, what does that mean?? X

jaqi1 profile image
jaqi1 in reply to topcat111

hiya i am new to this too. i dont even know what ALT means. i say im new to this but i have been on mtx for a year now and i still dont understand any of it. the docs say i have a cronic illness but i dont understand it. sorry for being so depressing x

helixhelix profile image
helixhelix in reply to jaqi1

There's a useful website that explains the tests at

labtestsonline.org.uk/under...

And have you looked at the NRAS website as they have some good stuff? But in a nutshell an acute illness is one that makes you ill and then you get better. But chronic ones stay with you. So tho' the treatment should make you function reasonably ok again, you will always have RA. Sorry. Ad yes it's depressing.... Px

helixhelix profile image
helixhelix in reply to topcat111

Were you given a monitoring book? The range that is considered normal should be in the back. Pollyx

jaqi1 profile image
jaqi1 in reply to helixhelix

no i did ask at the hospital but they said they dont do tht, so i have no idea what any of the readings mean x

helixhelix profile image
helixhelix in reply to jaqi1

See above for link to a useful website. It depends what units each test is measured in, as labs vary. Off the top of my head i think ALT under 60'ish is ok, but don't rely on this. I'll see if I can find the link to the booklet too. Px

helixhelix profile image
helixhelix in reply to helixhelix

Here it is...

nrls.npsa.nhs.uk/EasySiteWe...

topcat111 profile image
topcat111 in reply to jaqi1

You should be given a book that you take to every blood test, that's how they keep a Check on your levels to make sure all is well, xx

jaqi1 profile image
jaqi1 in reply to topcat111

i asked for one wen i last went to see my specialist and he just said we will let you know if there is a problem. this is why i dont understand any of this stupid illness x

topcat111 profile image
topcat111 in reply to jaqi1

Ask for one, my nurse gave me a bloody welcome pack!!!! I got a folder with a million books and reading materials in it, with details of support groups etc,!! In it I keep all my blood test forms and my MTX booklet,!! It is a handy folder!! Xxx

helixhelix profile image
helixhelix in reply to jaqi1

That's rubbish..and totally daft as the more you know the better you can help yourself. Ask your chemist where you get your prescriptions from as they should be able to give you one as well. px

jaqi1 profile image
jaqi1 in reply to helixhelix

thanks for your advice. i know what yr saying the more i know about this stupid illness the more i can help myself. but to be honest i dont understand any of it. sorry to keep going on xx

nottsexsportfanatic profile image
nottsexsportfanatic in reply to jaqi1

My hospital pharmacy refuse to issue MTX without the book that has the latest blood results recorded in it - I therefore thought it was a NICE guideline that all patients on MTX for RA had to have one of these purple books?

Tina

helixhelix profile image
helixhelix in reply to nottsexsportfanatic

Exactly! V bad practice not to have one, as important that patients are involved in the monitoring too. Jaqi obviously has one of the old school doctors who think patients are just there to be told what to do. Grrr.

Hi Tracey, you've really started something here! I read your question yesterday, saw my Rheumy nurse for the first time today & made a point of asking her about her views on MTX & alcohol. Then instead of getting back to you here I blogged about it 'cos i'm a bit of a divvy at the moment. The blog's called 'Alcohol' strangely enough.

Like you I'm trying to keep as much normality as possible while simultaneously trying to do everything I can to keep well. It's quite a balancing act, isn't it? All the best, Christina x

topcat111 profile image
topcat111

Hi Christina, thanks so much for taking the time to ask your nurse the most sought after answer of the month I think!!! It did help and I am not gong to become a T totaller just yet, I find it really hard having to give things up, my medication is now starting to kick in, so with that in mind I am going to re introduce my exercise which I miss lots!! I have entered the race for life and will be doing my best on the 29th July, I will not give in totally to this illness yet, and if I can have a drink then I bloody well will!!!!!!! thanks again, your answer really helped, and I know it's different for everyone, but I am just going to give it a go, bring on the weekend and time to party!!!!!!

Many thanks

Tracey. Xxxxxxxx

su2po profile image
su2po

There are people who binge drink regularly and tbh if you have 5 or 6 glasses of wine once in a blue moon with mtx It's not going to do anymore damage than people who binge drink regularly. I know this is not the healthiest way to look at it but we all need an outlet sometimes. If you know how much damage it is doing to you then it's your choice whether you want to inflict that upon your self just like it's a smokers choice to smoke.

There is an expectation from the doctors and nurses that after your diagnosis you will start eating healthier, stop drinking, exercise more etc but if you never did these things before you could be putting yourself under a ton of stress on top of dealing with a difficult disease. It's up to you. wiegh up the cost and decide for yourself I imagine your desire to drink will fade with time but it's a big part of culture so cutting yourself off from what was previously your means to socialise can be just as damaging. be sensible but not too sensible ;) we still have to live our lives.

nottsexsportfanatic profile image
nottsexsportfanatic in reply to su2po

Well put, I agree totally - some times we cant win for trying. As I have heard so many times - we didnt ask for this disease, but now we have to make informed choices as to how to cope/manage with it. Too many compromises could make us just as miserable and that could cause more complications - live your life in a way that makes you happy (within reason :-) )

Tina

Gina_K profile image
Gina_K in reply to su2po

Hear hear! Well said.

su2po profile image
su2po

Well said :)

topcat111 profile image
topcat111

Your so right, and I am and will!!!Within moderation!!!! I am careful that i don't do it regularly, but I am not going to give up my blow outs!!! They are too much fun!!! Lol...xxx

Gina_K profile image
Gina_K

Just catching up on this blog, and completely understand the sense of losing something else to RA Tocat! I did nt drink alcohol for the first 18 months on mtx, but now I do enjoy a couple of drinks on a Saturday night, maybe 2 alco and 2 soft, say cranberry juice, you just get used to it. I will have wine with my dinner on maybe Sunday.

My Rheumatologist specifically told me that she would have no problem with a couple of drinks a week if she was on mtx, so I resumed my light drinking. Think of it as a gain, you have probably done plenty of drinking prior to RA and felt sh.. The next day, so the bonus is no hangover.

RA is not a life sentence, it's a manageable disease if you can get the correct treatment and adjust your life to suit.

Xx Gina.

su2po profile image
su2po

You so right Gina, it is very managable. When I was diagnosed I had for the years previously been without drink, had quit smoking for two years and was in circus school learning acro and aerial, so the diagnosis hit me hard. Having everything taken away at once was really rough. I still haven't been able to go back to doing what I love fully yet and it's been near;y two years. I started drinking again after the diagnosis, it kept me sane to have an out let as I could no longer do press ups or cartwheels when I got frustrated, but yes moderation is the key.

I do think the doctors are not fully aware of how much they are asking of you when they give you a massive list of stuff you can no longer do. Understanding the disease intellectually, as they do, does not mean they understand what you are going through.

So I take everything they say with a pinch of salt and I think that in the long term yes I shouldn't drink and I should eat healthily but in the short term when I'm in pain a pizza is ok and few drinks with ,my friends to forget about it helps the stress levels no end.

dapper profile image
dapper

ive found that i cant actually drink as much now ,im on 25mtx injections and just starting on sulfazine ,and 2 drinks makes me feel quite off colour ,my blood results are absolutely fine though

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