Alcohol,Leflunomide and Methotrexate

ZiziB

Hello all,

I was hoping people here could share some insight on the above topic.

A wee bit of background if it helps…I’m 48, was diagnosed with Psa in July. Current meds are 20 mg Methotrexate injection once a week ( since July- tablets first then jabs) and leflunomide 20 mg daily ( now in my 5th week of taking).

I’m struggling big time with the festive season in general as well as a big change in lifestyle due to diagnosis. Before being diagnosed i would enjoy a drink with my husband, usually Fri and Sat eve. The odd tipple here and there with meals . But now i feel so confused.

I was under the impression that sticking well below gov guidlines was ok with Methotrexate, my Rheumy nurse told me this too. Yet google and drug sheet tells you otherwise.

Now the addition of the Leflunomide…it states on the bottle not to drink alcohol, then good ole google says 4 units max, however the pharmacist said to ‘be careful on a night out ‘ whatever the heck that means? I should have asked for more clarity unit wise there and then but my head was spinning with all the new info, blood tests, i was hurting and tired and just wanted to get out of the hospital pharmacy and go home.

I appreciate all the efforts people are going to to help me but this is throwing me and making me feel grumpy when turning on telly and seeing everyone with their champagne flutes etc..it’s very triggering. Also i might add my husband feels bad enjoying a drink now around me…can anybody relate?

ToneBlues

Hi @ZiziB

After struggling for 6 years with nausea caused by methotrexate, I started taking leflunomide for rheumatoid arthritis 10 years ago and at that time was warned in no uncertain terms that alcohol was to be avoided. Leflunomide and methotrexate are both liver poisons (hepatotoxic) and can potentially cause liver disease especially when taken long-term - it is for this reason we have to go regularly for blood tests - if our liver is struggling it will show in our blood in the form of transaminases (one of things they test for). I guess therefore it's worth being pretty careful when you take both mtx and leflunomide.

Alcohol is also (infamously) hepatotoxic - so the issue arises, just how much can our livers take? - each dose of leflunomide and mtx, and each glass of wine puts an additional burden on our liver and slightly increases the risk of liver disease.

I had a conversation with a nurse a few years ago and they said - 'oh the guidance has changed, you can now drink a little' - 'hmmm, what is a little'? - My nurse was, very sensibly unwilling to commit themselves, because of course everybody's liver is different, everybody's perception of alcohol consumption differs, there are lots of combinations of differing drugs. I take hydroxychloroquine with my leflunomide (alongside loads of other meds) and I'm sure that has a different impact on my liver than mtx taken alongside leflunomide. Who knows what alcohol adds to the cocktail?

In the end reducing my alcohol intake was not too difficult - I do drink a little from time to time, but not regularly, so as to allow my liver to recover. I never drink much at one time. I never miss going for blood monitoring - ignorance is not bliss.

I've found posh tasty alcohol-free things to drink (and there are plenty around these days) so I don't feel left out in company, and it really helps remove the social pressure. I now take care with drink because I like my liver! I talked to my partner (and friends) about all this, and she still drinks guilt-free when we go out, but I now don't feel social pressure to drink even when alcohol is being pressed on me ("Oh go on just have a bit - it can't do any harm")

I hope this helps ...and that you enjoy the festivities while taking care of your liver and the rest of you.

frogmorton

It's a tricky one @ZiziB and wow @ToneBlues I just LOVE your reply!!

I am like you Ziz a drink on a Friday and or Saturday night with my husband. Official advice is contradictory and confusing.

Personally I think it's because we are all different or build and the way our bodies cope is unique to each of us. So the can't give us a blanket figure. Over time your bloods will being to tell you how well your body is coping with your meds.

I suggest you experiment with the non-alcoholic drinks too....socially if you like it tonic looks exactly the same as a G+T! I also love those pink lemonades the one with ginger in is lovely. Other than that I am happy to have one glass of wine if I fancy it but absolutely not every night for me.

Take care and MERRY CHRISTMAS

ZiziB

@ToneBlues sounds like you had a bit of a battle with side effects, six years! My goodness ! I hope you feel better now on different regime.

My blood monitoring is ongoing and things look good so far🤞I guess it’s our first Christmas with this new issue to think about. I don’t really have the issue of social pressure, tbh the best evenings out i’ve ever had were teetotal ones!

@frogmorton yes, i agree advice is contradictory… Non-alcoholic wine to me is vile! The best beer i have found 0% are Budwieser and Becks (once bought purely by accident years ago, after several beers we thought ‘hang on a minute…oh,it’s non alcoholic😆’ specsavers appointment needed!) but as you said there are a plethora of low this and thats out there now.

Thanks both for taking time to reply, i appreciate it.

Happy holidays ya’all 🎄

ToneBlues

Yup the nausea was really nasty 2 or 3 days a week.

The beer I like best is Nanny State (0.5% alcohol) - in lots of supermarkets/online, not so sure about pubs/bars.

Arthuritis

@ZiziB These days most of the traditional alcoholic drink makers have spotted the non alco market and produced some very quaffable products. I have tried them all, and taste is of course very subjective.

Even the well known Lindeman’s has an alcohol free red, so perhaps take it as a chance to explore the world of alcohol free! I have supermarket alcohol free sparkly, reds, beers and while some have a tiny (0.5%) alcohol, its just enough to taste, so works well.

If you discover something nice do please post here so we can try it!

Woody

I started on Methotrexate (tablets then injections) for RA and OA, but my liver threw a bit of a tantrum? Now on Leflunomide daily tablets. Was advised to avoid excess alcohol, but warned that everybody reacts differently? I still go for a pint or two every few days, but always leave at least 2 days between pub visits and always force down a pint or more of water before bed (guarantees an early start the next day!) on the assumption that the last thing drunk will be what stays in my system overnight?

liver tests all fine now, although daily meds dose still quite low. Still enjoy the odd glass of red wine but actively avoid any ‘top shelf’ products (I do miss my G&T 😒).

I think it will vary from person to person, and I guess only time will tell if your lifestyle choices will impact on your condition or meds.

Heineken Zero (lager) & Adnams Ghost ship (bitter) are both passable and readily available? Too many wines to list here, and even alcohol free gin now available?

I hope you find something that works for you? Merry Christmas!

Anna

Hi @Woody, I see that this is your first post so just a quick welcome to the online community and thanks for jumping straight in with some helpful advice to another poster!

Its interesting that you’ve tried other meds for your RA and OA but they didn’t suit you so now you’re on Leflunomide which seems to suit you better. It sounds like you’re dealing with the alcohol sensibly - and as you say, each person varies in the level of alcohol that they can tolerate.

The Versus Arthritis website has a page on Leflunomide that you might find useful - it has a small section specifically on alcohol consumption:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/leflunomide/

Best wishes, and hope to see more of your posts,

Anna ( mod)

ZiziB

@Arthuritis yes i agree, since exploring the alcohol free range a few years ago the choice seems to have expanded significantly from ‘sneeze and you’d miss it’ to a whole 6 or more shelves dedicated to the stuff! Somebody somewhere is counting the dollars😆i will most surely post if i find something else nice.

@Woody thanks for the input, glad to hear your liver is behaving. I have been on injections for nearly 3 months, all seem ok at present. As you say it varies from each individaul, i will be treading carefully for sure.

I guess i will get used to the fact this is for life but it’s taking a bit of time to sink in properly…Thanks both👍

Arthuritis

@ZiziB The “this is for life” is hardest to accept. Last year despite the lockdown & getting covid twice I was fine, now, after different vaccines covid, fluvax… I am not! Ironic, I am now more vulnerable than ever!

Hearnelj

Hi @Arthuritis I'm also struggling with what alcohol in moderation might mean. I was OK until last blood test when liver function was highlighted. I take 17.5mg methotrexate weekly for PSA. Next blood test tomorrow morning to see if it was a blip or a warning. If you like gin I can recommend Haymans small gin. It's a full strength gin but you only need a thimble full for a proper tasting G&T. Comes nicely boxed with thimble. Not found a decent alcohol free alternative yet.

Arthuritis

@Hearnelj Thanks for the tip! Liquors can be almost impossible to replicate alcohol free as they tend to derive much of their quality from the ~40% alcohol! I quite like rum & brandy, which is a well established flavour set from the baking industry, but the French just won’t comply!

I did find a British company specialising in non alco liquors, Lyre, but you have to watch your sugar intake too, or I do to avoid flares. Those marauding white cells, T-eff love partying on alcohol & sugar at your expense.

Is your 17.5mtx injected or oral? I am on 10oral and already find taking it makes me really nauseous for 2 days.

Hearnelj

@Arthuritis sorry for tardy reply. My mtx is oral. I've been incredibly lucky that they don't give me any noticeable side effects yet and I've been taking it since April 2020.

Point about sugar noted. I've been doing the sugar free February challenge for a few years now but really need to make this a lifelong lifestyle change. Working from home has really helped as I can grab healthy food from my cupboards rather than visit the coffee shop for snacks. I've a greengrocer opened near me too so I now take regular walks for fresh fruit and veggies.

Last note about gin. My local brewery, Adnams, has now launched a low alcohol gin called Smidgin. Can't wait to try it.

Arthuritis

@Hearnelj SmidGin🤣Witty brandying ! Def not a rum idea!