I really, really, really miss my booze :-(

I know RA is a nasty disease and were really lucky to have drugs available to fight it. I also know we only get one liver so we have to look after it BUT I really, really, really miss my booze. Don't get me wrong I'm not an alcoholic but I do....sorry did enjoy the occasional tipple. Ok I admit it, I could crack open a few bottles of wine with friends and we'd sink a fair amount. I never did understand the need for bottle stoppers as once opened it was considered "rude" not to finish. I also liked a few glasses of Morgans and coke on occasions or vodka and tonic...*sigh*

So along came RA and Methotrexate with a warning to "Avoid alcohol"...Hmm, what did this mean? I looked up the vague guidance and found it was ok to drink but stay well within government guidelines so I abstained completely for over a year before gently dipping my toe back in the water. Eventually I allowed myself 3 measured units maximum a week and sometimes in one night. I even got a bit tiddly and felt like a normal person for a while.

Then along came Leflunomide and the big label saying "DO NOT DRINK ALCOHOL". Why when the drug was mentioned to me did nobody tell me this? I have to admit I'm finding my enforced dry life a bit depressing. I visited my Dad on Fathers Day and he was complaining to me that he couldn't have a drink after 7pm as he was due a fasting blood test the next morning. "It's so unfair" he said, "It's Fathers Day!" I tried to be considerate and told him "Never mind, you can drink tomorrow" but inside my head I was thinking "Stop bloody moaning! You're 78 for Gods sake and it's one night. Imagine being 45 and knowing you can't drink EVER!"

At the risk of sounding like an ungrateful whinger I just needed to get that off my chest. I'm sure I'm not the only person missing a Friday night tipple or a couple of cold beers with a weekend BBQ. So I'm off to make a coffee now...I know this is to be taken in moderation too...I'd console myself with a biscuit but that would ruin my diet. Hmph!

[Barrister]

I feel for you, it's so unfair! I've been on MTX since March with a short break in April due to some health issues and whilst I've never been a big drinker, I do like the occasional glass of wine, or better still, champagne. But of course, I haven't had any because I'm so afraid of feeling even worse than I already do. Clemmie

[Hidden in reply to Barrister]

Oh yes Clemmie I also like Champagne. Maybe when you've beenon the mtx a while you can ask your rheumy if an occasional glass is ok? My blood tests were always fine after a couple on mtx but I know some people can't indulge at all. I was at a black tie dinner on Saturday and there were 10 bottles of wine on the table for 9 drinkers and me...Water? No I had to ask repeatedly for that. I felt like a freak and was annoyed at having to keep explaining why I didn't want any wine. x

[allanah]

I think you should contact your Rheumy. You need to live your life and when I complained to mine, I love a glass of red wine, he just took me off and put me on a dmard I could have an occasional drink with. I wasn't prepared not to drink on Saturday night if we are out or celebrations. He said, yes you need to live your life and changed the dmard. You still have to be careful but not abstain. I found it too hard too Pauly, it's worth asking!? Xx

[Hidden in reply to allanah]

It sounds ungrateful for me to complain about drugs which basically give me a quality of life but it does make me sad. I feel like having RA is ruling my life now instead of just living with it. I'll have to speak to my specialist nurse Allanah and see what she suggests. Your rheumatologist sounds lovely. x

[allanah in reply to Hidden]

Lovely sometimes, I was calling him bad when I hC to come of the drugs for my biopsy. I think personally there are so many dmards he can tell you the ins and outs of them all but you need to live your life WITH RA not in spite off is my feeling but again I agree with the gong upset the apple cart. It's something though yo discuss cos after all it is a lifelong condition , hope you get some good info from the nurses xxxxxx

[Barrister]

I looked on the ARC site and it says there that you may be able to have a few drinks whilst on Leflunamide so you should ask your nurse or rheumatologist. Have you asked? I don't mind too much as I'm in Saudi at the moment which is (officially!) a dry country so it isn't in my face. But I will be back in the UK in July and we will be celebrating our 30th wedding anniversary and I am determined to have champagne then even if I have to skip a dose of MTX! Clemmie

[Hidden]

My rheumatologist said I could have a small glass of wine Clemmie when I asked about special occasions. To be honest that would just be torture and make me want it more! Maybe I'm just greedy lol. Hope you do enjoy your anniversary celebration, congratulations! I had a few champagnes on my 25th anniversary when on mtx.

[IainM]

Im on mtx hydroxy and sulph..I dont drink much but when I do I have a drink..my rheumy has told me to enjoy life and just be careful..there is no way I am living like a monk...this disease has taken so much away from me already but if I cant relax with my friends and have some fun when I am feeling upto it then I would crack up I think..having some alcohol some of the time surely isnt bad aslong as the most of the time you look after your liver and kidneys?..it says avoid alcohol on mtx also but rheumy says its okay..so I go with tge rheumy lol

[Hidden in reply to IainM]

I agree with you Iain, occasionally we need to just have fun and indulge like everyone else. I know in an ideal world we'd be tea total and live healthy vegan diets but where's the fun in that....apologies to any vege tea totallers out there!! x

[IainM in reply to Hidden]

Exactly, its got to be aloud, otherwise no fun, I know its not the be all and end all but it certainly helps to kick back relax get a wee bit tipsy and forget once in a while..I get it that I cant do it all the time and to be honest with all the drugs in my system my tolerance has diminished seriously, so I can't take as much as I used to and to be honest I liked a right good drink most weekends, not now though but all the same I like to kick back now and again, when I am up to it

[Hidden]

Hi paulywoo,

I had a look at the info leaflet ARUK produce on leflunamide. Under the section : Can i drink alcohol while on leflunamide? it says :

Leflunamide and alcohol may interact and damage your liver, so if you drink alcohol you should only drink it in small amounts ( no more than 4 units a week). Discuss this with your doctor or rheumatologist nurse specialist.

Regards

Sally

NRAS ( Helpline)

[Hidden in reply to Hidden]

Thanks Sally, that at least sounds better than the "Do not drink alcohol" warning label but of course I'll get medical advice first. It's just an extra kick in the teeth and I wish the rheumatology staff had discussed options before prescribing.

[nomoreheels]

Hiya Paula. As ever with any post regarding alcohol I'm the odd one out & don't miss it because fortunately (or unfortunately when I used to try) it doesn't like me. I nevertheless empathise with you because woe betide anyone who tries to stop me eating chocolate. You think crocodiles can snap!!! Surely the odd glass wouldn't hurt if only to help with your bp with the stress it must cause? I'd have a word with your Rheumy & reason your case.

Good luck.

[Hidden in reply to nomoreheels]

Thanks, Mmmm chocolate I know that hunger too!

[Hidden]

I did drink a little while on leflunomide. Same as mtx - I just kept a watchful eye on the bloodtests. Occasionally I'd worry that the bloodtests might not tell the whole story, but most people including the doctors I've asked seem to think they are a reliable indicator of how the liver is holding up. I know exactly how you feel about alcohol - I actually quite like the restrictions on over-doing it but a few glasses here and there are uplifting and add to the normality factor.

[Hidden in reply to Hidden]

Yes postle I must admit I don't miss getting hangovers after a night out x

[Beaches2]

Hi Paula

I am missing the occasional drink as well. Haven't had a drink since diagnosis and to be honest felt so ill I wasn't really bothered. Now I'm feeling a bit better I find myself thinking about the occasional glass at the weekend. Sat in a pub garden this weekend in the shade with my fruit juice! I'm on a high dose of mtx and leflunomide so guess there's no hope for me

X

[Hidden in reply to Beaches2]

You have my sympathy Beaches. At least I seem able to tolerate the sunshine now off mtx. I hope you at least managed a tasty pub meal

[Hidden]

Hello

Over the years I have allowed myself about twelve proven units of alcohol a week and the GP knows I do this.

Remember a little of what you fancy. Need I say more !!.

[Hidden in reply to Hidden]

Glad you've found something that works for you and great that your GP is on board. Mine seem to think that all normal needs go out of the window at diagnosis. x

[binlid]

hi stopped for 5 months when diagnosed then came christmas day and i thought no im letting this disease have my christmas its had everything else so i went out had a few brandies and was fine spoke to my rheumy and was told in moderation dont binge and ive had a tipple since then at least once a week and today a few to celebrate my birthday i know everyones differnt but hey ho cant stop everything xxx

[Hidden in reply to binlid]

Hope you had a happy birthday Binlid x x

[2plus2]

I was told half the normal weekly units and the most important part was to not drink them all in one go! Binge drinking will do more harm than an odd one here and there. I'm a West Country girl who loves her cider, so was pleased to hear that

[Hidden in reply to 2plus2]

Oh I love a nice cold cider on a hot day...in fact a cider on a cold day goes down quite nicely too I agree binge drinking sounds a very bad idea. It's clear from this thread that everyone has found their own levels where alcohol is concerned. Time to talk to my GP I think x

[Hidden in reply to Hidden]

Oh just stop it! I'm now fantasising about that cold cider, a country pub, a gloriously sunny, tranquil day .......

[magglen]

As a red wine lover, I used to have a small glass every evening with my meal, I sympathise. However, when I told my consultant how much I missed that glass he told me I could have three glasses a week. I don't but I do keep small bottles in and just knowing they are there helps though for some that would be too much of a temptation. Why not ask your consultant if you can have a certain amount a week,

[Jeanabelle60]

Awk, Paul......my heart goes out to you. In the beginning of my disease i too had to stay off the drink. To be very honest at the time I was so sick I didn't really care.......I would have done anything that would help me to get better.

Moving on 18 months later I was off MTX and started on Bio's. I am now able to have a wee drink of I want to. However, now that I can I find the desire has really left me. I don't have much of a social life like I used to have but when I do go out I find I can only drink a fraction of what I used to. Not trying to depress you more just saying what has happened to me!!!

All the best Paul. Xx

[Hidden]

I have discovered an alcohol-free beer that is genuinely pleasant!

I am enjoying one now on this hot summer evening!

It is called Erdinger. (I hope I am not breaking any rules by advertising it!)

I get bored with water and don't like fruit drinks.

I do have an occasional red wine especially with a meal. I think that's a way of slowing its absorption.

Cheers!

[nomoreheels in reply to Hidden]

My h had to have a period of time without alcohol because of meds & he tried all sorts of non alcoholic beer & the only ones that satisfied him as being near the real thing was San Miguel 0.0% & Alhambra Sin, both of these in Spain but have seen the San Miguel over here. In fact, when was able to drink alcohol again he continued to drink it during the day in the summer months as he found it refreshing & he could quench his thirst without the effects of alcohol. It's worth noting that not all "alcohol free" beers are actually alcohol free, some do have a little in but he couldn't have any alcohol at all until his condition was under control& it was difficult to find any with no alcohol but still tasted acceptable as a substitute.

[norfolkjo]

I really feel your pain. I now view alc free cider and wine as the equivalent of e cigs xx