Dmards, alcohol and depression!

[Josie2]

I really dont know where to start so bare with me while i waffle (which i'm good at)!

I am the first to admit i like a drink, glass or 2 of wine on an evening with my hubby.

I always thought i was ok with this until my RA set in!!!

I'm on leflunamide which my rheumy tells me i can have my weekly units but i know i'm way above them.

I'm just stressed out at the minute with flare ups, meds and now wicked steroid tablets along with being a newly diagnosed RA and i'm first to admit i havnt been very rigid with my alcohol intake!

I'm really worried but as my blood counts are ok i am thinking i am ok?

I am sorry to admit but i really feel i need a drink just to help me try and cope with it all!

[juddo39]

Oh Josie, pleased to meet you, I feel exactly the same and continually beat myself up over this (I'm on methotrexate,sulpah,hydroxy) but like you my blood tests are always ok....

The past couple of months I have never been pain free but the wine 'warms' me for a bit like an escape into 'normality' but then next day I feel worse and joints feel more ceased up and I get annoyed at myself as my rheumy told me no more than 3 units a week and sometimes I know I have way more than this....

I too am feeling very stressed out with it all at the moment and cannot seem to get a proper handle on it all Sorry I'm not much help to you but really felt compelled to let you know you are not alone.

J x

[helixhelix]

Hi Josie (and Juddo...) You really are having a bit of a rough time at the moment aren't you, so much sympathy. But I think it is pretty normal, I remember the bit around getting a diagnosis as being the absolute worst. So first off, don't beat yourself up! RA takes some getting used to, and there's so much to deal with that it can get a bit difficult to come to terms with everything at all once. I used to drink, and enjoy it hugely, and yes this is a tough one. I don't drink now, apart from maybe an egg cup full on rare occasions, which actually suits me much better but it took quite a while to get to this place. And I really don't miss it at all, as well as feeling that I'm helping myself by looking after my liver. And my friends love the fact that there's always someone who's ok to drive.

Docs vary, as some say don't drink at all, and others say a little bit is ok but overall it does seem that you do need to try to stick to the weekly limit at least. The drugs are tough on your liver, and even tho' blood test may be ok, by drinking you are giving your liver extra work to do. So I think it's unlikely to help long term to ignore all the advice about sensible drinking, but equally to try to change yourself overnight is also likely to be unsuccessful.

I'm not going to tell you it's alright to continue as you are as in my personal opinion (and that's just me, I'm not a doctor) it isn't. Your long term health, and ability to get this ****** disease under control is more important than being able to drink lots of alcohol. But be realistic about what you can manage. Perhaps start by replacing the second or third glass with something soft, Or drinking spritzers rather than pure wine, Or even making sure you buy wine that's 10.5% not 14.5%. And don't worry about it as an immediate thing, but maybe try to set yourself aims of drinking a tiny bit less or having had a couple of alcohol free days by the end of the month, and keep going from there. Good luck, but do try.... Polly

[oldtimer]

I know I put off re-starting on methotrexate because of the alcohol restriction - so I can sympathise.

Hate to tell you this but alcohol is a nervous system depressant. It starts by making you feel slightly up, a bit excitable and talkative, ignoring the pain, but then the effect is to make you low. So you go up, then down.

A little won't have too much "low" effect (or "High") and relaxes you.

If you're feeling that you must have it - it's a problem.

I'm now on azothiaprine instead - but alcohol makes me feel so sick I'm off it....miss the nice side of it though.

[sylvi]

The year before i got RA i was diagnosed with a hiatus hernia and was told that i would have to give up alcohol among other things. I did give up the demon drink and yes i did drink more than was good for me. I was then told the next year that i had RA. Now i have to say if i was drinking with what has happened to me in the last 9yrs i would be dead now. I don't say this lightly as there is a history of alcoholism in my family. I don't regret giving up the drink and i am a better person for it. Thats me personally and i can't comment on others who like a drink.

Sylvi.xxx

[earthwitch]

Don't beat yourself up about it being hard to keep your alcohol intake down, but I would really encourage you to work as hard as you can to find ways to do so. As others have said, the combination of RA drugs and alcohol really WILL knock your liver badly, and if you want to be able to control your RA, then you need to be able to keep taking the DMARDs which you can't do with a damaged liver.

Its also incredibly hard to just slow down your alcohol intake if others around you are drinking regularly and you usually keep up with them. I'd suggest that maybe one way to do it would be to just do a bit of a white lie, and tell all your friends and family that you have now been told that you aren't allowed to drink at all for a while and instead of trying to cut down, just stop it. Sounds horrible, but in some ways its easier than trying to figure out how much is safe, and your friends will understand better that you can't drink, than that you have to drink less. Once you have got used to that, then you can try reintroducing whatever "sensible" amounts your doctor allows.

Blood counts aren't a very good way of showing what is happening. By the time they change enough to be worrying, the damage could be done, and alcohol liver damage doesn't usually recover very well.

[Hidden]

Hello Josie,

I'm 56 and I've been drinking way more than is good for me since I was about 18 - a slightly late start, at least! When I found out about the alcohol restriction with MTX I was in despair, I just couldn't imagine life with so little alcohol to take the edge off. I was 'good' though, but found that measuring out wine was quite depressing, somehow.

Occasionally I do go over the allowance now & my blood tests have been okay so far. But usually I drink what I'm allowed or even less! I think if I'm honest with myself that drinking had seemed to be getting harder, if that's the right word, for a couple of years. I seemed to get drunk quicker, feel sleepy quicker, get less of a high and more of a come down than ever. And I do think that I had been ill or at least getting ill for a couple of years before my diagnosis. And in my case, at least, alcohol doesn't seem to go with inflammatory arthritis. I do feel better for drinking so little &, amazingly, I don't seem to mind too much any more!

I know that you are having a really difficult time just now so I personally don't think you should beat yourself up about a few lapses. However, over and against that, if your liver does start to kick off then you might be taken off the drugs that you need. Just go easy, Josie. I'd say that the nice thing about having a drink with your hubby is that he knows what is going on with you so I guess he's unlikely to encourage you to drink more than you should? (It is heavy drinking occasions with family or friends that flummox me - I hate being sober in such situations!)

And again, obviously I don't know, but it sounds as if you like the ritual of that evening drink almost as much as the alcohol itself. How about getting yourself a very small wine glass - works for me but then I'm easily fooled!

I totally understand the irony of being told not to drink (much) at a time when you feel you most need it! But I'd recommend that you work at getting the units down while still enjoying the benefits of what you do drink.

Good luck,

Christina xx

[Hidden]

Like you I enjoyed a drink and still do when I get the chance! On diagnosis I stopped as I was placed on MTX straight away and reading all the literature thought better of it. Plus the consultant advised against it. However to combat this when out, I always ask for drinks that look like red wine and request they are placed in a large wine glass. The look and feel makes you sip like wine and it gives the illusion of drinking wine.

Now that I am on Embrel and Leflunimide, after several months of blood tests, I am allowed the occasional wine. As my earlier blog states I am going on a cruise next week, and both consultant and gp are allowing me one small glass of wine per night with dinner.

Although you are finding it tuff at the moment my advice would be to follow what your medical staff are saying, you would hate for your blood counts to go haywire and not know if it was the demon drink or your body not coping with your meds.

I think in your heart of hearts that is what you are already thinking. Take care x

[su2po]

When I got diagnosed that was a problem for me, my ability to do regular exercise was taken away from me and that was a coping mechanism for allot of things so I sttarted drinking more. In my personal opinion I'd say you need to reduce your alchohol in take but I think that is not the first thing you should deal with. carry on as you are for now and put that problem on the back burner while you come to terms with your illness you will probably find that as you deal with it your desire to drink will reduce as you learn what it is doing to you. It's not good for you but I liken it to binge drinking, very bad but not something you can't recover from. It won't help your situation physically now but if you put yourself under too much stress to live the perfect life NOW then that won't either. take your time and handle all these new things one step at a time and when you are ready just be aware about it too. I'm not a doctor that is only my personal opinion but I think this particular issue has more to do with your current mental health in dealing with your situation. I wish you the best of luck.

Su

[Ailsa-NRAS Partner NRAS]

Hello Josie

You have received lots of sensible advice here but I thought it might help if I add my two pennies' worth! I was on the Britsh Society for Rheumatology DMARD guideline group and the MTX/Alcohol issue was one we looked at and reviewed the evidence. Our recommendations in the guideline were that you should stick to government guidelines for men and women. Using a small wineglass instead of a large one when you can easily pour yourself a glass which is actually about 3 units without realising, is helpful. I tend to stick within the guidelines and have 3 alcohol free days per week, but that means that come Friday evening I feel I can enjoy a couple of glasses without worrying.

Hope this is helpful

Ailsa

(NRAS CEO)

[Hidden]

Every time I've exceeded my units - or even actually consumed exactly my units - my GP has phoned to say that my liver enzymes (or whatever) have been a bit raised and I've had to reduce MTX by a dose.

I did get very depressed when I was in limbo and in a lot of pain and took to malt whisky every night. It was hard cutting it out when i started the mtx a year ago and i missed the g&ts too. But a pal of my late mum is a retired consultant dermatoloigist and she told me that she always advised her PsA MTX patients to avoid alcholol entirely as did her colleagues - so was surprised thst RA patients were told otherwise?

I'm very lucky because over the past year I've discovered I can get the same sort of relief or high from exercise and dancing as I used to get from booze sometimes. I don't touch booze or caffeine now and I sleep better for it and don't get so low these days because the drugs are working on my pain pretty brilliantly, so I can get an endorphin high through exercise instead and this makes me look and feel a whole load healthier and thinner with better skin than I've had for many years..

So I now get my highs from this instead of booze. But it didn't happen instantly - I had to sink pretty low to come back up the other side where I am now. I feel I'm potentially poisoning my body enough with taking MTX and Hydroxy and so try to counterbalance this by losing weight slowly but surely and by keeping fit - which I can now do thanks to the drugs. Don't want to sound like a born again health fanatic here but its been a good time for taking stock for me? But not by punishing yourself each time you break the rules -just by being kinder to yourself and finding other coping mechanisms that are less destructive perhaps? Tilda x

[jonsi]

oh im the same , i love a few glasses of wine, but my pain is unbarably sore the day after ( wonders why i bother drinking at all, good at the time though)

be strong and keep your chin up ! xxxx