Drinking!

Boo

Alcohol of course ...

Originally diagnosed over 12mths ago with Palindromic Rheumatism and was prescribed an anti inflammatory. However, over the year flares were frequent and painful and I just felt generally unwell all the time. Struggled because I work full time.

Back to rheumatology, diagnosis is changed to RA (cried) every time I tell someone I cry. Started off in serious denial ... and have moved into anger ... with one of the main reasons I'm so angry is because I can't drink!

I'm now taking methotrexate and plaquenil with folic acid and I'm completely furious about not drinking. My life has and will change due to the condition but I can't bear the thought of not drinking like I used to.

When going through the methotrexate 'interview' the nurse said "do you drink alcohol?" "yes ..." "How much do you drink?" ME: "A lot" - he said no-one ever says that

Anyway ... are there other options of drugs because of course I want to be pain free and to reduce any joint damage but I enjoy drinking and this is having a massive impact on my quality of life - my choices.

Does anyone else have this issue or am I a lone (drinking) voice in the wilderness?!

stickywicket

You're very new to all of this, Boo. I don't just mean the RA and its meds but even the original diagnosis of palindromic arthritis was still a very recent one. You are still getting used to a life of change. You have 'lost' a lot and the good life you had has to be 'mourned' before you can truly immerse yourself in your new arthritic life and discover for yourself that it's not all bad. Give yourself time. Be gentle with yourself.

Alcohol. Well, I have RA, I take methotrexate (and hydroxychloroquine aka plaquenil) and I love my wine...and a good, dry cider....and single malts but the latter are now a rare treat. However, I drink one glass of wine most evenings with my meal, I almost always stay dry on meth days and, although I sometimes make it a couple of glasses when with friends, I also try to have another dry day per week too.

The difference between us is that you are new to meth and I have been taking it for 14 years all with beautifully low ALT levels on my regular blood tests. You need to establish, for weeks / months that your liver is coping well with the meth and, if it is, you can relax a bit on the alcohol but only a bit because, if too much is asked of your liver, you're stuffed every which way.

You write “of course I want to be pain free and to reduce any joint damage but I enjoy drinking and this is having a massive impact on my quality of life - my choices. “ and I find myself smiling a little, wistful smile – sympathetic, empathetic but wistful. If you ever find 'pain free' please let us know because most of us don't even aim for it. RA will always have 'a massive impact' on our lives. End of. There's no getting away from it. Not just alcohol. Your choices will be restricted in all sorts of ways. This is all part of acceptance of the disease. If you aim for 'pain free' you will end up on stronger and stronger meds which will all take their toll on other aspects of your health.

There is life – and good life – after diagnosis but it won't be the same as life before. Adapt and survive is the way forward. And try hard not to get angry and stressed – that's nectar to arthritis. It gobbles it up and thrives on it.

dreamdaisy

I was initially furious when I was put onto tablet meth and told to have a 'dry' three months to establish how my liver was coping. The sheer joy of developing a rash and being taken off the meth shortly before a local beer festival was tremendous - my rheumatology department has never heard a louder 'Woo-hoo!'

I have psoriatic arthritis, for which I inject methotrexate and humira, and swallow sulphasalazine tablets. None of them have helped the PsA in a direct way but they have slowed its development. Neither do they help the OA I have developed in some useful joints, thanks to the damage caused by my first five untreated years of PsA. I still drink wine on a regular basis but pay heed to my ALT results: I veer between 18 and 34, my hospital begins to be concerned at 50. I have lost my taste for beer and spirits, white wine is my go-to fuel of choice (and I frequently go to it).

I agree with Sticky, you are very new to all of this and the changes the disease appears to demand are a sickening blow to the guts but it may not always be this way. My hospital takes the view that moderate alcohol consumption is OK but each individual varies in their tolerance and you do need to establish first how your liver is coping with the drug. I resented those first two months and became an utter grouch because I thought I had lost something very important. How immature. :oops: I hadn't of course, and with a little more arthritis maturity now I realise that. I am in my eighteenth year of this malarkey and can be quite philosophical about it at times but at other times I sulk. Many of us do - it's a necessary coping strategy.

Be kind to yourself, it is not easy being dictated to by a disease but in the early stages that is how it has to be. Once you know what's what you can begin to dictate in return. Arthritis may be with us to stay but it is categorically not the boss in our lives. DD

Boo

Thank you both. I appreciate your thoughts. I'm definitely sulking ... and indeed stamping my feet at being told what to do!

At present I AM pain free. I had a steroid injection which obviously worked very well, I'm tolerating the new drug regime really well (just a touch of mild nausea), have been for my first blood test and have a big box with all my meds in and a diary to tick off what has to be taken on what day! (I'd never remember without that)

It is all new to me and I do resent the whole thing, but of course I accept that I can't change it but must go forward as positively as possible.

But the drinkng is a big issue for me ...I'm not a genteel glass of wine with dinner type , I don't drink at all during the week, but I do like a good old drink at the weekend !

I will of course be sensible and haven't had a drink at all for 3 weeks but I do want to discuss drug options with the rheumatology team because nothing was discussed with me they just went straight to methotrexate.

It's really helpful to get this off my chest so thanks for listening

stickywicket

Hey, sulk away, Boo. You're being honest about your thoughts and feelings and that's good. Much better than pretending. And you have plenty to resent.

I had to smile at your “genteel glass of wine with dinner type”. I don't think anyone would call me genteel even though, alcoholically-speaking, I guess I fall into that category these days. My tipple of choice used to be whisky but, paradoxically, before methotrexate got my RA under control I found alcohol went straight to my joints and next day just wasn't worth it. I know we used to have one guy on here ('MrDJ') who regularly came off the meth when he went on holiday. I guess that's more easily done than coming off it for the weekend :roll:

As for a change of meds – meth is the usual starting DMARD. Occasionally sulphasalazine. I don't know if the alcohol thing applies with that. I'm sure someone will tell you. However, if the meth works I'd be reluctant to stop it. Just because one works for you doesn't mean to say another will.

dreamdaisy

Accepting that one has a condition like this, which demands and takes so much, has been likened to the various stages of grieving which may involve shock, denial, anger, bargaining, depression, loneliness, adjusting and accepting. I wasn't shocked or in denial (it was more of the same thanks to a lifetime of auto-immune issues), I used to be angry but couldn't sustain the required energy, I became depressed when the OA was diagnosed, I felt lonely because no-one in my social circle has anything like this but I am used to it now and realise that this is as good as it can currently be (which is not as good as it used to be! )

Your life has changed and has done so by something entirely out of your control. Is anyone else in your close and extended family affected by any form of arthritis? It can run in families or spring from the blue, mine sprang but now knowing what I know I was a fool not to recognise it earlier. DD

Boo

Yes it is in my family, which in one way makes it worse. My dad has RA - he is 90 and it didn't develop in him until he was in his 70's. He was always a strong and active man so this was a big blow for him also at the time.

His sister (Auntie Mary ) was however severely affected by it from a very young age and was left quite disabled. Of course the drug treatments available now, were not there back then.

One of my sisters (I have 5) has psoriatic arthritis and also is on methotrexate (but is tee-total ... )

So I guess I got those genes ...

I was definitely in denial to begin with and now I'm having the anger but as I said I'm not currently in any pain so maybe I'm slipping back into denial ...!

I really am grateful to have found this space (and such friendly peeps!) to get this out, because I'm getting myself all twisted about it!

I know that it's life-changing and I have to adjust and I think that's why I'm angry about the alcohol restrictions ... I have enough to deal with, without not being able to drink! :x (A lovely long vodka and coke with ice please ... )

I'm fairly sensible and cheerful on the whole so hopefully that will carry me through and bring me out the other side (and I can whinge a bit on here till that happens! )

Really useful to hear about other people's experiences too.

dreamdaisy

Whinging is both necessary and useful to release tension but it's best to whinge to those in the know, especially if they are strangers. You may find two articles on the interweb interesting, one is called The Spoon Theory, the other There's a Gorilla in my House. Both give succinct definitions of living with an on-going, chronic condition and can be useful reading for friends.

Why does knowing it's in the family make it worse? :? I am an only child and inherited eczema and asthma from my mother's side, the psoriasis from my dad's: they weren't affected by anything but made sure I copped the lot. My PsA came completely from left field but it does make genetic sense. I am deliberately without issue - medical knowledge was improving as I entered my mid-teens (back in 1974) so for me it was a no-brainer.

I won't be about so much over the next couple of weeks, I am going on holiday tomorrow, have packed my rarely-used tablet and have no doubt that the wifi will be appallingly slow, which will test my limited patience. DD

stickywicket

Whinge away, Boo. We all need it and do it and we all understand its usefulness here where no-one is going to take offence