alcohol abuse and mtx

Hi, I'm a new member to this group. I was diagnosed with RA about a year ago with very mild symptoms and was prescribed methotrexate. I took it for several months and apart from spending a day or so a week throwing up, it relieved the slight symptoms I had and I didn't develop any further ones.

My problem is that I suffered from extreme anxiety and panic attacks for over 20 years and used to self-medicate with alcohol. In other words, I spent twenty years as a lush.

I've told my doctor about my concerns, but maybe she didn't understand.

I rarely drink more than a couple of pints of beer a week now, but every couple of months I might have a few days of drinking quite heavily. I live alone and my entire social life is the pub quiz.

Anyway, I have recently been under a lot of stress and have felt quite anxious. I got so worried about my liver that I haven't taken the mtx for about three months. I know it's irrational but I've just got myself in such a state about the meds.

In the last couple of weeks I've been having problems in my hands wrists elbow and shoulder. I started taking the meds again but I was so sick I had to stop.

There must be a drug that will panic me less, surely?

There must be other problem drinkers with RA?

Any advice, please?

Thanks in advance and sorry for extremely long post :-(

73 Replies

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  • I feel that I have given my liver quite a lot to put up with over the years. Like you, I'm much more sensible now. I had a liver scan a few months back. That was because I'd had raised ALT levels on & off for over a year (more on than off) but I do really seem to need to take Mtx alongside Humira. The scan was to see whether or not the raised ALT was indicative of liver damage so that we'd know whether or not it was safe to continue with Mtx. Would you believe, my liver is absolutely fine! And strangely my ALT levels have now been normal for ages.

    It may be that your rheumy would consider sending you for a liver scan (it's ultrasound, quick & painless) in order to assess how well you can tolerate Mtx given your history. I think I'd level with the rheumy .... your fears aren't entirely irrational but a liver scan could show that they are unfounded.

  • Thanks so much for replying.

    I have told my rheumy my history but she doesn't think it's anything to worry about and all my bloodwork has been fine except once when I had food poisoning. I'm sure she's right, but my anxious brain doesn't believe my rational brain!

    So glad your liver scan came back ok-I will ask about getting referred for one.

    Got an appointment with my Rheumy nurse tomorrow so I'll try to get something sorted out.

    After getting an early diagnosis it would be ridiculous to have a lot of joint damage because I'm scared of the meds..... :-(

  • Fear of meds is not uncommon. Obviously nobody would take Mtx if they didn't need it but the degree of toxicity is a tricky one to pin down. I dreaded taking the tablets at first but I've been really lucky in terms of side effects ..... basically none. I'm only on 10mg these days but I used to take 25mg without problems. Comparing this experience with a hangover ..... which of course is due to poisoning, well, there's no comparison. And I know that when I drank too much it showed in my face, my skin tone, everything. Since getting a combo of meds that works for me I look tons better as well as feeling so much better. I would say that my general health is good.

    Of course, uncontrolled PsA also wasn't exactly a recipe for good health ... same as uncontrolled RA it affects the whole person. We do take Mtx in very small doses compared to its use for chemo. Sometimes quantity is key e.g. a couple of aspirin are pretty much completely harmless but too much will, presumably, kill a person.

    I hope you can get your head around all this in a way that works for you. I think you are absolutely right to face your fears and admit them, they are real. But unlike heavy drinking (and believe me, I'm in no position to preach to anyone!) Mtx can actually make you feel better!

    I'm glad you made this post. Drinking to excess is very common too. I loved your wry comment about the quiz ... seems to me there's a lovely sense of humour there. I wonder if you can find a way past the loneliness? Another very common problem! Good luck to you. Keep us posted!

  • Many thanks!

    I'm not really drinking at the moment-it's more the fear of "what if I do? what if I have a bad depressive episode or a stonking great panic attack? and get drunk?" that's bugging me. It's more a problem with anxiety than alcohol, really, I suppose.

    I don't have too much of a problem with loneliness, but all my friends are drinkers so if I didn't go to the pub, I would be a bit lonely. Luckily, I'm pretty good at having a pot of tea or a soda water instead of beer. Again, I think that most people's social lives are inextricably linked with alcohol these days, whether they themselves drink or not - pubs, restaurants, dinner- parties all tend to focus on booze. So I was surprised that I couldn't find more info about alternatives to mtx because of alcohol use/abuse.

    Maybe people don't admit to it, but as 1 large glass of wine a day is the full allowance of units of alcohol, there are a lot of people out there drinking more than the recommended amount.

  • I'd just started Mtx, only recently been diagnosed ... it was all new and daunting. Then brother & sister in law turned up for the weekend. They like a drink ... when we got together, drinking (invariably too much) was what we did. I made an okay meal, we ate outside in the sunshine. Then they got the wine out, plonked a bottle on the table ... I went up to bed & cried. I don't even recognise myself from that time. My best friends where I live are heavy drinkers but I can spend an enjoyable evening with them drinking ginger beer. I never thought I'd be able to do that.

    Yes, if things really get on top of me I might just take to the bottle. I've got away with it so far and anyway it happens only rarely. I think what's worked for me is just thinking about it all really. Turning it all over in my head. You could tell your rheumy about your fear of binges if you haven't already. Just keep working out what you really want & pushing yourself towards goals. Like you say, most people don't admit to it. Those of us who can face up to reality are already ahead of the game in some respects.

    I don't know if you'd 'qualify' for biologics, they are less hard on the liver. Though of course drinking too much with diseases like RA and PsA is not a great idea regardless of the drugs. So really your efforts to limit alcohol intake are going to benefit you all round.

  • Be kind to yourself about this one. Anxiety in the face of such large issues is not surprising, and it's not a failing. I like the idea of taking someone with you. If you're to get effective treatment your rheumy is going to have to help you deal with the anxiety, whether she thinks it's big or not. It's big in your life, so it's a big deal. xx

    Bats

  • Thanks! It is difficult sometimes to get a specialist to see that what might be the best treatment for the bit of you that is their responsibility, it might not be the best in terms of the big picture of your general mental and physical health.

    My rheumy doesn't think it's a problem because I don't drink much and my bloodwork has all been fine, but she doesn't see me peering anxiously into the mirror to see if I've gone yellow. In my head, it's a real issue :-(

  • HI Azabat, just read your very nice post and wondered how you were doing.

  • Hello. Your worry is quite understandable. At every visit with my doctor he does blood work to make sure my liver is doing okay and that relieves and worry I may have about the drugs playing havoc with my liver. Do you get tested when you visit the doctor?

    I'm sorry it's scary. Sometimes the doctors don't understand our concerns as much as we'd like them to. When that happens I try t o be as blunt as possible with my questions but of course just keep it polite. 😊

    Take care.

    Cas xx

  • Hi Cas, thanks for replying!

    I have blood tests once a month and they've all been fine, thank goodness.

    I think that's why my doctor doesn't really understand what I'm panicking about.

    It's quite hard to explain irrational anxiety to someone who hasn't experienced it!

    Anyway, I'm going to see if there is another medicine I can take that's less aggressive to the liver.

    Thanks again for your response!

  • You are not to drink alcohol while taking methotrexate. If you would like to talk privately about your alcoholism, you can e-mail me at brianwillis57@aol.com. I quit drinking about 25 years ago and know how to beat this. Trust me, there is a wonderful life with out it, and there are other things you can do when you feel you have to self medicate etc. Blessings and keep smiling, you are worth it!!!

  • Oh dear - judgements here.

  • Is there a way to send private messages on this site to others?

  • Interesting that MTX scares you more than alcohol, which is probably far more toxic!

  • Yeah, well, that's mental illness for you! No rhyme nor reason to it. :-/

    In any case, I'm not so convinced that alcohol is much more toxic than mtx to be honest. Seems to me that mtx is a highly toxic drug. Neither of them are ideal, really, are they?

  • Couldn't agree more. Hate being on MTX. Sorry if I appeared flippant.

  • You didn't, no problem! :-)

  • Have taken mine this morning and feel so nauseous. Would love to give it up but am doing it slowly.....just in case it all goes pear shaped.....

  • Ugh. I feel for you.... I had started taking it again but I missed last week because I was so sick. In the few months since I stopped taking it though, I've had problems with my shoulder elbow wrists hands and feet so I know it's better to take it. I was just hoping there was an alternative, really.

    I hope you feel better soon - it really is the worst feeling. :-(

  • Try taking the methotrexate at bedtime. I hope your rheumy has advised you to take folic acid 12 hrs before - or 12 hrs after the dose. It really helps with nausea. Good luck!😄

  • I was told not to take it the same day as the MTX as it can inhibit the effectiveness. I assume you haven't found that to be a problem? I shall go and have some now as its 24 hours later!

    I haven't tried having it the day before...it's always a balancing act isn't it? I'll certainly try that next time and see if it helps. And will delay taking it till the evening, although I don't like eating so late.

    The post MTX nausea is far worse since starting Humira. Has anyone else noticed that?

  • Hi all,

    I've had my folic acid dose upped a lot over the years to counter mtx side effects. I get to take one 5mg tablet every day except on mtx day, so 6 days a week. This is the maximum amount of days I'm aware it it be prescribed without negatively effecting mtx.

    The enzyme dihydrofolate reductase assists us in DNA synthesis and cell replication, and will bind with folic acid. Mtx has an inhibitory effect on this enzyme, stopping it from doing its job. We take folic acid, so that mtx immunosuppressive effects are reduced, but we must also accept the enzymes reduced abilities during mtx taking day, since this is how we get to be that bit better. It is therefore vital that we take folic acid, it counters the side effects of mtx by allowing the enzyme what it needs to bind with. All of this lets our cells function.

    Best regards,

    Sarah

  • I was told and have stuck by the advise that I was not to take my folic on the MTX day I am very lucky in as much as I haven't had any side effects from the MTX, I am also taking Prednisalone & Lansoprazole and effervescent painkillers, my imflammation is still very bad and just been to Occupational therapy for splints to help me at work .

  • The liver is the one organ than can regenerate so maybe yours has managed to look after itself despite the years of alcohol. You could perhaps take someone with you when you next see your doctor, who might be able to help your doctor to see why you've been so anxious about the medication and your liver and so persuade them to let you have a scan. I think the majority of the medications given for these inflammatory diseases are pretty toxic for our livers. But if you are having blood tests regularly then any problems with your liver would be picked up fairly quickly and if you ask for copies of your results, you would be aware of any changes or problems quickly too and could speak to your doctor about them. It's perfectly understandable to be anxious and your doctor should be able to help you to find a way that you can cope with both the anxiety and the medications. I really hope you can find a happy medium. Clemmie

  • Thanks so much for your reply. I think it's a good idea to take someone with me. I'm not very good at being assertive about it because I'm embarrassed about the anxiety. It makes me feel like a twerp.

    My bloodwork has all been fine so far and I'm having monthly tests so I hope that it would show up if there were a problem. It would suit me better if I could pop in every..oh, I don't know....36 hours or so to check up on the liver :-)

    Thanks for your good advice -I really appreciate everyone's feedback and support.

    Terry

  • I had panic attacks/anxiety etc for about 50years - lived on medication to get through life - drugged or drunk its all the same an awful way to live ( this was before I got RA) I then heard of a Charles Linden - you can google him - my life changed completely after following his 'method' it was amazing. I stopped relying on all sorts of drugs to get through the days ( and sometimes alcohol as well) and now move about in society ok and even do a job that I never thought I would be able to manage. Have a look at his web site - see what you think. I wish there was a Charles Linden Method to get rid of RA it is the pits but not as disabling as panic attacks and anxiety. Good luck xx ps just take the drugs (Methotrexate by injection doesnt usually make you sick) and regular blood tests will keep you safe from liver damage. xx

  • Thanks! I'll have a look!

    I am much much better than I used to be. Menopause seemed to get rid of the worst panic and depression symptoms (I always susupected it was hormonal but no-one listened!)

    It's just that if I get stressed I can still spiral into anxiety if I'm not careful and then it's hard to get rid of the irrational fears.

    I'll definitely look up the website.

    So glad for you that you're so much better. Anxiety disorder is the absolute worst. Ruins your life.

    Best wishes,

    Terry

  • Thanks for your reply - I try not to give advice I hate people telling me what to do !! but an anxiety disorder is dreadful - the worst thing ever - you are controlled by pure all consuming fear and drugs and drink were the only thing that took the edge off the fear for me but they use to make me feel so ill. I now really look after my mental health - I meditate, do yoga, fresh air and exercise and eat well all the stuff one is suppose to do. Look after your self and keep in touch with this site - you will get lots of kindness and support from people

    Cheers

    Lorna

  • Could your Dr. refer you to someone who could help you deal with your anxiety and panic attacks rather than just trying to control it yourself. Your consultant doesn't seem to concerned however it is not there feelings we are talking about, you are the important one.

    Very best wishes, my daughter suffered from panic and anxiety attacks before her baby was born, probably hormonal but very real and scary for her. Fortunately her midwife referred her to a counselling service and she is functioning well now.

  • Hi! Thanks for replying and for your advice. I think a few people have missed what I was trying to say about the alcohol. It's not an issue any more for me but anxiety about it is! It's really the anxiety that's the issue so I probably gave this post the wrong title.

    Your poor daughter! My anxiety started with post-natal depression so I really do feel for her. I'm so glad she's feeling better. It really is a horrible condition. :-(

    Best wishes, Terry

  • Oh thanks Terry, Yes she is a lot better now thanks just has the occasional panic it has made such a difference to her life.

    hope you can find someone to give you support to help you through these awful attacks.

    Very Best Wishes, xx

  • I love your honesty about your alcohol issues. Not many people are honest about this.

    Going to the pub and socializing is a big part of your life. Who wants to be alone all the time? I used to be a bar tender many years ago and there are many "virgin" cocktails and alcohol free beer that taste pretty good. So go have a good time with your friends at the pub.

    There are many meds to help your anxiety on the market today. You need to get your anxiety undercontrol. Alcohol is a depressant and it is very hard to give up on your own. You are probably physically addicted to it as well... Do you shake in the morning and need a drink? Go talk to your GP and make your doctor understand your alcohol consumption is out of control. You need medical help to help you go through withdrawl symptoms.

    You are a worthy person who deserves to be anxiety free. Take the first step and pretty soon you will descover how wonderful you are.

    Take care,

    Sue

  • Thank you! I really appreciate you all taking the trouble to reply.

    My alcohol use is under control now that my anxiety issues have improved so much. I only drink a couple of pints of beer a week now, when I go to the quiz. The last time I drank alcohol was about three weeks ago, because I've been busy on quiz night.

    At one time it was a real problem because it was the only thing that dealt with the almost constant panic attacks. But that's a long time ago now.

    I really wanted to ask about less hepatotoxic meds because I've got such a hang-up about the mtx

    It's an irrational anxiety about my liver and the mtx but irrational fears are real too!

  • Hi , I think you realise it's your anxiety that caused you initially to self medicate Nd in now mAkong you anxious about drugs!

    I would chat to another GP about your anxiety . If you do now like some drinks I sole to my Rheumy who changed me into another dmard at that stage as I with our social life could not contemplate not drinking again of worry about having too much .

    But for me treat the underlying anxiety first . Great Leap Forward acknowledging your anxiety it's not nice but you can get there with support X

  • Thanks Alannah! :-) Good luck with the new meds!

  • So sorry - I spelled your name wrongly!

  • I would just like to clarify: I probably gave this post the wrong title. Probably I should have called it anxiety and methotrexate.

    I do not currently have a problem with alcohol abuse. I did, however, in the past when I suffered from almost constant panic attacks and severe anxiety disorder. My anxiety has now improved beyond measure, so I no longer self-medicate with alcohol. I am still a social drinker though, although I now drink only a couple of pints of beer a week.

    However, I do still have a tendency to develop anxieties and irrational fears, and it is because I've developed this anxiety about mtx's effect on the liver that I was asking about alternatives that are less stressful for the liver.

    I'd like to thank everyone who has so kindly taken the trouble to reply.

    Best wishes, Terry

  • Hiya Terry & welcome. I've taken MTX for 7 years & whilst I don't have any problems accepting that because it works well for me it is helpful knowing I'm being well monitored with monthly drug monitoring bloods, a comfort blanket I suppose. I don't tolerate 20mg very well for example, my liver results rise but if my dose is reduced to 17.5mg my levels are within normal parameters again so all's well.

    Without labouring a point but do you think it's that you think you've given your liver a bashing in the past with alcohol that is causing this anxiety or the MTX itself? Getting to the route of your anxiety will go a long way to regaining control & seeing the real normal flesh-coloured you in the mirror. The thing is as well lots of the meds used to control RD are metabolized in the liver, as are NSAIDs & pain relief which are often also prescribed for us, do they bother you too or us it just MTX? Something else you may want to chew on is that MTX is largely removed from the body by the kidney! Keeping well hydrated also help with side effects, you could try telling yourself that's easing it's journey by drinking more water. It obviously works for you if not taking it for 3 months has caused your symptoms to return. Nausea is enough to deal with without your other concerns but that can be helped by either injecting (if you're taking tablets) or increasing your folic acid if there's room to. Maybe think of folic acid as being your antidote to you thinking the MTX is having an effect on your liver?

    I think that you're seeing your nurse tomorrow is the perfect opportunity to discuss your concerns. There must be something else you could be prescribed if you prefer not to discuss it or try find some other way to overcome this mental block. You can only ask.

    The mind is an odd thing isn't it? My normally rational h has been seeing a psychotherapist connected to emotional problems following cardiac surgery, first time he's ever 'reached out' because he's not one to share fears, you know the kind. It was a major step to acceptance & coping & all the better because he initiated it. Maybe talking therapy would help you, or speaking with someone on the NRAS helpline (free from a UK landline) 0800 298 7650, Mon-Fri 9.30-4.30. It's difficult when you have anxiety problems, well done for acknowledging that you do but that's the first step to self-help with this really, we need to act on it & sort it once & for all.

    I'm sort of hesitant to give this link because you don't give the impression you have trouble with taking meds per se, just the connection with MTX & your liver, anyhow this is it nras.org.uk/keep-taking-the... maybe it will help in some way.

    I hope some of my rambling has helped in some small way! ;)

  • Thanks so much for your wise and thoughtful response. It has helped.

    You're right, I don't really have a problem with medication in general, but I think that half the problem for me is that I was so ill with anxiety and depression for such a long time. It ruined my life my relationship with my partner and also caused enormous problems for my children.

    So when I miraculously felt so much better about 7 years ago, it was so amazing. Like, although twenty years of my life had been wasted, at least I could now start to have a proper life. Finally I could stop taking medication and be normal.

    Then a year ago-bam-RA.

    At first I didn't have any idea it was a serious illness (yeah, I know) and then when the nurse started describing the heavy duty drug regime I just felt like crying.

    My 'normality' and even my social life was being stolen from me AGAIN.

    So, yeah. I was shocked and traumatised by the whole mtx thing.

    And I object. I REALLY REALLY OBJECT.

    So all this has affected me so that I've started to feel anxious again. And although it's not like when I had panic attacks - I know why I'm anxious for a start - it's made me worry about slipping back into depression and anxiety in general.

    And a big focus for me is the meds. I feel really insecure about the drug.

    I'm going to try to explain all this tomorrow. Instead of being all reticent and British and self-effacing because I know it doesn't make rational sense.

    I appear to have unloaded on you big-time,nomoreheels! Sorry!!

    Thanks again,

    Terry

  • No, not unloaded, quite the opposite actually, by replying to me I think you've answered your own question which is good! Well, tell me if I'm wrong but what occurs to me then is that as you saw alcohol as a crutch & needed necessary meds at that bad time in your life. Now you have a similar situation but rather than alcohol it's a different type of chronic situation you need meds for now & it's MTX, which is a bit unfair because there's every chance it could help you just as you've been helped before. Being diagnosed has brought back the elephant in the room so it's little surprise that you're feeling as you are but I do think you're focussing on the bad it could do rather than the good given a chance. Does that make sense? If so you're blaming MTX when in actual fact it doesn't deserve to be blamed because it's the med which will help you with that chronic condition, just as anti depressants helped you through the previous bad point in your life.

    As you don't drink anywhere near the amount you used to & only when you're socialising I wouldn't think you're any more at risk of having problems with your liver than the next person. Just don't drink on the one day of the week you take your MTX or the day before you have your monthly bloods, that's only 5 days in a month.

    I'd still discuss it with your nurse, she may be able to see it from a different angle, helped another patient in a similar situation even. Explain that you're apprehensive about taking MTX, she may be able to help but you don't know unless you broach the subject. Do question if you're needing a folic acid increase too as you're feeling nauseous. Good luck & do let us know how it goes.

  • I wonder whether you're asking the wrong doctor? From what you've said in your replies it does come across that the issue is anxiety not alcohol. And that is something that your GP should worry about rather than your rheumy. Have you spoken to your GP?

    The main alternative to MTX is Leflunomide and, if anything, it's more hepatoxic than MTX. In traditional drugs ones that are ok with alcohol aren't as effective so a bit counterproductive to go for something that may not work as well just in case you have a wobble. And they have other side effects that you may find equally difficult. And biologics you tend to have to take MTX alongside. So I think worrying about the drugs might be a bit of a red herring? And if your rheumy is anything like mine she's not interested in anything other than the state of my joints. If emotional wellbeing is not her thing, your concerns may not have registered at all. As long as you're not an active alcoholic she won't care.

    So maybe focus on whether now's the time to work on your anxiety issues?

  • Yes, that makes a lot of sense. I was just hoping that there was an alternative treatment that didn't freak me out so much.

    Thanks very much for the feedback.

  • Hi. Not really the best person to offer help but I take methotrexate 25mg by needle each week. My mum died from alcohol so its a subject I know. I don't drink much but I do occasionally go out for a meal say and I get through a lot of red wine! I know you shouldn't drink too much on this drug but I think as long as its not every day and you have blood checks regularly then then the occasional lapse will not hurt. In fact I feel a lot better after a few glasses of merlot! But that is my experience and we are all different. Take care and I hope you resolve this worry you have.

  • Thanks for replying Cathy, I really appreciate it.

  • Hi, I think nomoreheels has talked a lot of sense (she generally does). I didn't get on with MTX and am now on hydroxychloroquine (HCQ), which doesn't react badly with alcohol (you have to have blood tests but not as regularly as for MTX) and there is no nausea. There are loads of other drugs apart from MTX and these are what you should discuss with your doctor if you rheumy isn't interested. And don't forget... the liver is the most forgiving of organs ... it takes a hell of a lot for it to give up the ghost and I'm positive you are absolutely miles off that happening.

  • Thanks! I'm hoping to discuss changing to HCQ with the rheumy next time I can get an appointment to see her. My GP is writing to ask for an earlier appointment, otherwise it wouldn't be till November. She's also arranged for some counselling for me, so maybe I'll even get over my MTX hang-up. We can only hope, eh?

  • How did you get on today Terry?

  • Not so great really. I cried a lot. The rheumy nurse told me I'd got to keep taking MTX a lot.

    She's leaving, so no appointment until October. And no appointment with the rheumatologist until November unless my GP can get me an earlier one. The helpline may or may not be in operation for the foreseeable until such time as a new nurse is recruited. I feel a bit cut adrift tbh. I did explain about my anxieties surrounding the drug and she knows I haven't been taking it regularly but she just tells me I've got to because it's the best option. It's no good it being the best option if it's staying firmly in the packet though, and I said that.

    No real way forward was found. She said get counselling. I said that it's in hand but in the mean time....

    So, yeah. I like her very much, she's lovely, but ...not really the outcome I was hoping for.

    Never mind. GP appt on Thursday. I'll bend her ear about it. And do some more crying no doubt. :-(

    Thanks for asking and sorry for such a long reply!

  • Oh I'm sorry she wasn't receptive to your concerns. Well, next step, your GP who I hope is a good listener & understands your immediate concerns. As we know time is limited (unless you booked a double appointment?) so I'd jot down bullet point notes so you get the most out of your appointment. I really hope your GP is supportive & recognises how things are. Surely the nurse you saw isn't the only one in your Rheumy department? Do ask if an earlier Rheumy or nurse appointment could be arranged, 6 months or more without guidance or treatment just isn't helpful for you, or even an option... you need support before then. x

  • I'll get my GP on the case. She's great and very supportive so fingers crossed.

    Thanks!

  • Hi attatel

    Bit late joining in on this one and you seem to have already had lots of good advice. Just thought I'd add a few words as your post struck a chord with me. I became ill very suddenly when I was almost 30, and drinking was a large part of my social life. I was put on MTX and like you worried constantly about the effect my life was having on my liver.

    I eventually was taken off it as even subcutaneously I was physically sick most mornings.

    However, it did help my RD, and I never once had a dodgy LFT. And I carried on drinking, every night apart from MTX night. A lot more than a couple of pints on some nights as well.

    These days some 16 years on I no longer drink excessively and my RD has been well controlled by Humira alone for the last 5-6 years. I am only on Humira alone because I went through every other DMARD and either had a severe adverse reaction or just found no benefit from taking it.

    My rheumy is also a top man. That helps.

    I also have suffered from depression / anxiety, still do to some degree, and I know you know this already but your alcohol intake was nothing compared to some, and your levels now mean your liver should be in rude health.

    I'm not adding anything that hasn't already been said, but just thought I would add another reassuring post to the ones you have had already. I think it would have helped me at the time to know so many other people felt similar feelings to me, and did similar things. And didn't suffer any ill effects!

    Also the fact I am just on Humira shows it can be done, but it took a long time and I was in a bad way for a long time before I was allowed to take it on its own.

    Finally when I was on MTX I was told to take folic acid on every day apart from injection day. I never realised there were so many different ways people took it.

    Good luck with finding a solution that works for you, and doesn't cause you to worry too much about it.

    All the best.

    Ade

  • Thanks Ade. It's very helpful to hear from you. I'm getting the impression that a lot of people here are lifelong teetotallers who have never been up the pub in their lives. :-)

    Seriously, I'm grateful for all the feedback and advice but I can't help feeling that this is a more common worry than I've so far discovered.

  • I was on mtx for about ten years and had to be taken off it because of liver damage. I was very carefully monitored which was something. I dont really drink although I did as a student ! I'm not sure what my experience offers, except that some people can get away with it and others not!! My instinct would be to drink in reasonable amounts if I want to as long as this doesnt make me ill. The mtx was horrible to take but it did help a lot.

  • Thanks Cathie. I appreciate the support and advice.

  • Hi,

    I've probably not got a lot to add that the others haven't mentioned but I also have problems with mtx nausea and sickness and I was given an anti sickness drug called Cyclizine, also switching to injectable mtx has helped me.

    There are other RA drugs, I also take hydroxychloroquine and as far as I know it doesn't affect the liver at all. I did used to take sulpursalazine but I know that can affect the liver. There are a lot of newer biologic drugs too but I don't know about their side effects.

    I can understand your worries about any bad side effects and damage they can do, not sure if you do already but it's worth having regular blood tests and I also just had a liver scan (ultrasound), I'm waiting on the results for this.

    I'd recommend trying to get an appointment with a specialist RA Nurse as I find them easier to talk to than the consultants are.

    Anyway you've come to the right place for information and support

  • Thank you Lee. Hope the scan result is ok. Best wishes, Terry

  • Hi attatel

    Welcome to the group.

    I've been on mtx for 20 years. Tablets at first them injections which sorted out the nausea and vomiting the morning after. When I first went on it I had a big social life and loves a drink but I've never had any problems with my liver. I suffer from anxiety too and found alcohol actually made it worse.

    Maybe you could confess in your GP who could write to your rheumy. Mtx seems to be the first disease modifier they use now but I was first put on Sulphasalazine.

    They reason they go in treating RA from the very beginning is it helps halt the disease early therefore lowering the chance of joint damage.

    Have you had any cbt for the anxiety?

    Come back to us as often as you like, we are always here.

    Kiki

  • Thanks Kiki. I'll probably get over my fear of the drug eventually.

    I've had CBT in the past, yes. I didn't find it particularly helpful for severe panic attacks but I use the techniques all the time to try to combat less severe worry and find it useful.

    I know that I'm struggling with taking the mtx much more because of my tendency to anxiety, but honestly, it's not really that loopy to be reluctant to take a highly toxic drug when you think about it. At least with that other highly toxic drug, alcohol, you get a decent night out with it. ;-)

    Trying to properly realise the future consequences of not taking something now is much harder than understanding the immediate risks. That's why giving up smoking is hard for people after all - you've got to try to envisage what may happen to you years later.

    Anyway, just rambling now!

    Thanks again, Terry

  • I love your sense of humour Terry. 😁👍There are less toxic drugs that's why I mentioned a trip to the GP, also if you look up RA on the national institute of clinical excellence website there will be a care pathway for diagnosing and treating RA. It may mention others medications. I've twice been in hospital started new medications and the person in the other bed has been having a terrible time on said medication so I really can empathise with your anxieties but I've been in lots of drugs and my liver has complied for 23 years now (yay).

  • I don't want to diagnose cuz I'm not by any means a Dr. My son has drank for many many years & very heavily. He stopped cold but did go to Dr. & received help in pill form. It helped & last night received his 60 day coin!!! His health has done a 360.... He has dropped 37 lbs. & feels terrific & health issues have subsided. If you get a handle on the alcohol your meds will help you RA. But, that's a person decision!! I'm only sharing what I have seen 1st hand. Not judging!!! Good luck either way

  • Hi Attatel,

    Think I'm adding to everyone else, but wanted to wish you well and hope you don't mind me adding my thoughts.

    Mtx is a horrible drug, I despise the side effects often, but it helps. A few times I've wanted to quit the drug, but five minutes on google images on a rheumatoid arthritis search reminded me why I take it. Sometimes mtx is more disabling than the disease, but its about the long term, not just now.

    I wouldn't worry about drinking, I spent about eight months abusing my liver every other weekend while on 20mg mtx during year 1-2. The blood test tells you if there is a problem, make sure you stick to it religiously, even take a blood test sooner if you're starting to worry.

    It took me until last year to realise that my rheuma nurse helpline could be called for anything relating to my condition, including how I feel and what my concerns are. I thought it was emergencies only, and even then I'd just see my gp. They are for everything RA related, including this topic. Everyone here can give you a taste of their experience, but the best thing to do is absorb what you feel is relevant then call the rheumatology nurse helpline (think every hospital has one, otherwise call your hospital and have the nurses contacted). They can tell you about the alternatives that you're eligible for, the side effects and whether it's a good idea. Please do give them a call, that's what they are there for.

    On the plus side, and I'm counting down to this, it should be about 9 years until the nervous system hack is available to those with severe RA. There is also promising research published on the use of mtx which is conjugated with gold nanoparticles. This is brilliant, it will mean that less mtx is needed to get the same effect by using nanoparticles to reach the target cells. Presently, be it tablet or injection, we are all given more than the body needs of mtx as this is the only way to be certain that the required therapeutic dose makes it to the target cells, without the various biological and chemical barriers blocking it. Obviously substance abuse (booze, cigs, other things) are bad, but the RA sufferer will, in the future, have a bit more wiggle room when the new meds are patented, confirmed in human tests and eventually (many years later) released to the most extreme patients, until those moderately effected can get the same help (or go private). I don't know if I'll make it into remission and be able to live without mtx, but it's nice to think that there are better options in the mix.

    All the best of luck, do keep in touch so we know how you get on!

    Best regards,

    Sarah

  • Thanks for all the info Sarah - that's so interesting! I try to stay away from google as much as poss, because I already worry enough as it is so I didn't know about any of this. It's encouraging to know that there may be more user-friendly treatments in the future. Fingers crossed. Well figuratively - mine are a bit too swollen to cross at the moment :-(

    It's also reassuring to hear that your liver survived - I'm not intending to go and get legless but it's good to hear anyway. I think it's very hard for people to get realistic advice about this because obviously no professional can say anything other than 'no alcohol'. I'm middle-aged but it must be terrible for young people with this condition especially as it's such a drinking culture.

    Thanks again for taking the time to answer,

    Terry

  • Hi Terry,

    Glad you found the info interesting. Its the nervous system hack (do read about it if you haven't before: telegraph.co.uk/news/scienc... which I'm most interested in, since it means that we won't require mtx but instead pass a magnet over an implant to activate it, then three minutes later turn it off with the same magnet movement. Three minutes a day will prevent our immune system from attacking itself. I don't think the nanoparticle research is well known yet, its only on mice trials and only three academic papers, that I'm aware of, have published on this mix and method. There will also be lasers to get it into the system, which I'm most excited about as I've a phobia of needles.

    With your pub trips, it doesn't sound like you overdo it. My consultant told me, when I was first prescribed mtx, that I could drink a few units a week without worrying about it. While our drs are looking after us, it's tough to give everything away to the condition, especially when you enjoy it. If, right now, you need a drink, then no one will stop you. When it changes and you don't want one, then don't do it. Naturally the amount you drink will likely reduce on its own, as long as that's what you want to happen, but this condition is a reminder on the importance of health, and there is no reason to have a hangover when you get one from mtx and pain killers anyway. Same with how you feel, if you're feeling uncomfortable, anxious or sad, then I'm a firm believer that you should embrace the feeling, analyse what you think will prevent you from feeling that way again and then take steps towards making your life the way you want it. If its the worry of mtx and your liver then go for a blood test to take away the stress. Everyone has ups and downs, and this is a good thing, if we didn't feel sick or sad then we wouldn't appreciate it so much when we feel better or happy.

    Best regards,

    Sarah

  • Hi Terry. :) Anxiety is a funny thing: yours is making you avoid your mtx; mine is making me avoid alcohol!

    My father was an alcoholic with a diagnosis of RA. He never took any medication for his inflammatory arthritis, and kept on drinking. He used to say he didn't want to poison himself with drugs, and saw alcohol as 'natural'. It also helped him self-medicate away his pain. Over the years, I noticed him reduce how much he ate so he could continue drinking, develop IBS and worsening psoriasis, become increasingly disabled, and deal with various mental health problems.

    I was only diagnosed with inflammatory arthritis a few months ago, but I have known I was ill for several years. My previous GP believed my chronic pain was caused by anxiety/depression, and I almost believed her, although I became so disabled I could barely walk or climb stairs, and suffered from an increasing range of inflammatory symptoms. Luckily I moved house and changed GPs, and he spotted that I needed a hip replacement. That re-focused things for me very significantly: anxiety causes many problems, but it does not destroy hip joints!

    I realised my anxiety was caused - or at least made much worse - by being ill and not being taken seriously. It made me mistrust my own judgement and doubt my sanity. I wonder if you have had similar feelings, Terry? Once I knew it wasn't 'all in my head', it changed my perspective... I started to push harder for answers, and by the time my fingers and toes started twisting too, it was obvious to me that something was really wrong... Last year I also developed IBS, uveitis, bursitis, tendinitis and systemic enthesopathy - all inflammatory problems - and was finally diagnosed with IA/RA and then PsA.

    When I started mtx, I was more than anxious: I was scared. I think most of us are. Who wants to take long-term medication? Who wants to have to have blood tests because those meds are risky? But for me, my fears about methotrexate are outweighed by my fears about what will happen to my body if I leave it untreated. Because I already know.

    I think it's harder for people to come to terms with taking medication if their disease is caught early, because in the early stages, IA/RA is 'invisible' or 'silent' and it's sometimes hard to believe you're ill. And it's hard to remember that the pain isn't just something randomly horrible and unlucky - it's a *symptom* of inflammation that is slowly doing damage.

    For me, anxiety is such a horrible feeling because it's irrational; it's fear that can't be addressed. Now, my anxiety has been replaced by rational risk management: taking mtx has risks and is scary, but not taking mtx has *more* risks, so it makes sense to take it. The decision feels very straightforward to me, and my anxiety is much reduced, because there's something I can clearly DO. Maybe that's an approach that would work for you too, Terry?

    Good luck :)

  • Hi flow4 / terry

    That's a very good point about seeing the end results in your father, and so sorry you had to see it that way. That must have been / still be tough.

    Anyway, after I'd had relatively uncontrolled RD for about 5 years I needed my first hip replacement. Despite having work related private cover (and not knowing what I know now) I was classed as an emergency (read 'we didn't spot it in time') and got a very quick admission in a nameless NHS hospital. I was on a general orthopaedic ward that was open plan, women at one end \curtains/ men at the other.

    I should've known what to expect when the night before the op the anaesthetist offered me 'something to help you sleep' which I happily took. Only good night out of five.

    There were several men in my section with moderate to severe mental health issues. Not their fault, they had nowhere else to go. One in particular was as you describe your father, he had severe IA ?RA, had been on the ward for ~6months, was an alcoholic (with no booze), didn't comply with medication so had totally uncontrolled disease. He was in a terrible state physically (and mentally).

    He made me realise what the alternative to taking your meds was. A lesson well learnt.

    I have never had surgery in an NHS hospital since (and I've had 4 more lots of surgery), it was truly the low point of my life.

    I should just add that not all hospitals are like this, it was a very old Victorian building and the 'problem' people (bed-blockers to use daily mailspeake) were not able to be discharged as no suitable accommodation could be found for them. That's care in the community for you. 🙄

    Also the surgery was very (so far) successful.

    Be strong.

    Ade

  • Yes, I think so. I'm so sorry you've had such a difficult time of it, as well as suffering from depression and anxiety. I have also felt like I can't trust my judgment and it's awful. Fortunately, I'm so much better than I used to be. I don't any longer have panic attacks, I have no qualms about leaving the house (which was a big issue for me) and for the last 7-8 years my mood has been so much better. I tend to get anxious about actual things that I can identify still, but that's so much better than not understanding why you're frightened.

    The last year, though, since I was diagnosed with RA, everything has been getting to me a bit. I also had to have tests for heart disease and for COPD and thankfully all the results came back fine. But it was really worrying while I was waiting for the tests then the results. I think that general worry is what has brought my anxiety about MTX to the fore.

    Only good thing about it was, I've given up smoking although I'm using an ecig. I figured that the COPD scare was a definite wake-up call. So that's a positive. And I know smoking is very bad for RA so I'm happy about having finally done it after 40 years.

    Thanks so much for your support and advice,

    Best wishes, Terry

  • Ha - I'm an e-cig convert also.

    Once you start making positive life changes, you just can't stop 🍟😱

    Ade

  • :-)

  • Hi everyone, I'm going to visit my mother for a few days because she's 91 and she's got the flu, so I won't be around but I'd just like to thanks everyone so much for all your help and advice and for taking the trouble to reply to me.

    Best wishes,

    Terry

  • Go back to your doctor asap. TELL him about your anxiety problems and they are getting worse and you need help. He will arrange for an appointment with a mental health nurse (all anxiety disorders come under this) and you'll have help to be assessed to your treatment see if you suffer from depression or if you will need cognitive behavioural therapy CBT - which I promise you does work!

  • just to add, it may not feel like it, but the breathing exercises you will learn and changing the way you think DOEs sound silly BUT is does work. In reality the alcohol actually makes the anxiety worse when you use it as a medication.

  • I too was not happy to take methotrexate and delayed it for about a year but then I was in so much pain I was desperate and decided to take the drug, much relief made all the difference to my quality of life, I am lucky though that I've never drunk alcohol so that wasn't a problem, I guess when symptoms really impinge on your life you may feel the same as I did and give the methotrexate a try

  • Drinking alcohol and MTX = NOPE.

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