Newly diagnosed, can't even drown my sorrows!

Posted , 12 users are following.

Hi,

I've just been diagnosed with psoriatic arthritis and started on methotrexate. Before I took my first dose, I read the patient info leaflet and discovered no alcohol allowed. My rheumatologist failed to mention that. Given I'd given it up for about 5 of the last 8 years due to 4 pregnancies and just recently returned to socializing like an adult, this was almost as bad as hearing of the diagnosis itself. I'm in a country where I could fairly easily move to biological but I'm nervous about the side effects. I'm fairly mild right now, 1 knuckle, 1 knee and 1 toe affected but ok on NSAIDs. I would like something that prevents bone changes so I'd like to stay on treatment but I'm young enough to be embarrassed about telling people why I can't indulge in a bottle of wine with them at dinner etc. So I've a few questions for you all

1) would you recommend the sulfa one instead?

2) would you try to go to a biologic and if so which one

3) I can't seem to get an answer to 6 months on and 3 months off treatment (for sake of liver, cancer and other nasty side effects)?

Thanks so much. Having a hard time with the diagnosis so it's nice to find a group of people going thru it too.

1 like, 19 replies

19 Replies

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  • Posted

    I have been on Methotrexate once a week since May.  I just read the fine print that says, "May cause drowsiness, alcolhol may intensify this effect.  Use care when driving a car or operating dangerous machinery."  I generally have a glass or two of wine each evening.  I have had absolutely no problems.  I have not even felt drowsy.  That might not be a bad thing in the evening.  I do not drive because of vision problems, but I would never drive after a drink anyway.  So, anyway for me, it has been fine.  I have had no side effects from the methotrexate at all. Good luck!!!

  • Posted

    Hi there ...yes it sure is a bum diagnosis! I am 46 now and was diagnosed in 2008.

    I was on methotrexate for over 7 years until recently when my Rheumy put me on Sulphasalazine instead. I wanted to come off Mtx because I was fed up with the side effects ( thrush being the most irritating - pardon the pun!). I took the pills for 3 years and was injecting it for the last four years.

    To be honest I was also fed up with having to miss my dose more often than taking it due to infections and always being the sober one at parties!

    When I first started Mtx I was told to keep alcohol within recommended weekly limits although some say you should not drink at all.

    Over recent years and after having a couple of raised liver results I became virtually teetotal just to be on the safe side, but boy was it boring!

    Over the course of my 7 years on mtx I had four raised readings all of which seemed to coincide with a bad infection and the taking of penicillin. Every time it went back to normal within a week.

    Mtx is the first line of treatment for psa...it works for many and if you have psoriasis your skin will probably improve too. But there's no getting away from it....mtx is a very strong drug......I would ask your Rheumy directly if you can drink alcohol or not. Make sure you have regular Blood tests so potential problems are discovered early.

    As far as 6mths on, 3 mths off is concerned ; I doubt it would work. Mtx takes about 3 months to start working anyway...it needs to build up in your system.

    I'm not convinced Sulphasalazine will work for me and my skin is getting worse now Mtx is leaving my system.

    I'm in the UK and we have to go through a protocol of drugs before they would consider a biologic I think.

    Just gotta keep on going! Good luck to you, methotrexate is a successful drug for many, just follow the advice your Rheumy gives you

  • Posted

    I totally agree with 2shaziebabes (love the username!). 6 months on, 3 off won't work as mtx needs to accumulate in your system.

    I don't drink but I thought a glass or two at Christmas wouldn't hurt! I had 2 glasses of wine and felt fine, but then when I went for my monthly bloods a WEEK later my liver results were double normal!! I dread to think what they were the morning after my 2 glasses!!! I may have felt the same but my poor liver didn't! I'm teetotal now, it's too risky and no alcohol is worth it to be pain free!

    I'd recommend mtx and Enbrel (Entenercept) or mtx and Humira. Sulfasalazine didn't suit me at all.

    Goodluck!!

  • Posted

    Hello

    Sorry regard your diagnosis, I have had PsA now for over thirty years, I am now a pensioner at 66 and am still suffering this rotten condition.

    When it comes to DAMARD medications I am unable to take them now so -TNF are also blocked to me, they all make me ill and reduce my immune system white blood cells become very low so now I am stuck and have to try and control my condition.in different ways

    Where we are, the UK if you are unable to tolerate DAMARDs they will not prescribe Biologics. You are in a catch two situation I have known for so long.

    PUVA seems to work in a way as do many of the creams, the problem is however many of the creams are irritants and many thin the skin.

    Let me know how you get on, PSA is a condition that effects the immune system the medications reduce the immune system and control the PSA.. It is one big problem as most also effects various internal organs etc

    Keep a hold I hope all goes well for you

     

    • Posted

      To reach the biologic therapies in the UK, two DMARDS must have failed beforehand THEN you quailify for a biologic. Two failed DMARDS is not a disqualifier but a qualifier in the UK??? Have a look at NICE Guidelines for PsA treatment 
  • Posted

    Right the disease specific drug is otezla. See if you can get into that if you can access the treatment. Re mtx - if your liver bloods are OK for 3 months you can start having a glass of wine in it.
    • Posted

      THanks lucynewas, this is what the doc said he'll try next if my side effects continue (eye issues). Cheers.

  • Posted

    Hi I have been taking mtx for 8 weeks now and it was a shock to me not drinking. I am on 20mg now and no difference yet in my joints. I hate it now no alcohol but need to feel better then I do now.
  • Posted

    Hi I am on Sulfasalazine and MTX and about to start on Embrel,  Although I am not a big drinker now (well not like i was in my navy days) I still drink alcohol as and when i like and how much i want, I do not think it has effected me in any way except for being drunk, I dont go out to get drunk every day but I might have a bottle of wine every now and again, If It was me i would try a glass of what you like but not on the day you take the MTX see how you go, if you feel fine then all good. 

    I have been on medication for this condition for the past 3 years It has not improved really on Sulf or MTX as you are aware there are many drugs to control this condition it is a case of finding which one or combination works for you. 

    best wishes 

  • Posted

    I know if someone is on Methotrexate they are entitled to drink or not drink, it's up to them.  BUT, it's not how you feel after drinking that counts, it's what the alcohol is doing to your liver that counts and that is something you can't feel until it's too late.  

    The only way you'll know if something is going badly wrong with your liver is to have your rheumatology bloods taken reguarly.  Alcohol increases the toxicity of Methotrexate, and can cause problems for your liver, which is why zero alcohol intake is usually recommended.

    I'd just hate anyone reading this to get the idea that if you feel ok after drinking, or just the same as you always have, then you're liver is not affected.  It's not how you feel, it's what's happening to your liver that counts and you can't feel that, it only shows up in your blood tests....  sad

    • Posted

      A glass of red wine with dinner has been shown to be beneficial.  I had my primary care visit today to get blood test results.  My kidneys and liver are perfect.  I am going to be 80 in January.  If I choose to have one glass of red wine with dinner, I am going to continue doing so.  What I meant in the letter related to methotrexate is the warning of drowsiness was the concern with alcohol.  I do not feel at all drowsy and have had none of the possible side effects that are listed with that med.   I would say that drinking to excess, meds or no meds is not a good idea.  Moderation is the key tdo almost anything.  
    • Posted

      It is your choice to continue to drink and there is nothing wrong with that, and I know that a glass of red wine has been found to be beneficial, but not generally if you're taking Methotrexate. This is not my personal opinion, it is the opinion of my Consultant and the Rheumatology departments advice that I attend is to avoid alcohol completely. This isn't my opinion, but the medical advice I have been given by more than one doctor.

      But it is your choice to do what you want, and it may not interfere with your bloods at all. I was just passing on my own personal experience and the medical opinion I've received to the community.

    • Posted

      Good advice and yes the Medical proffesion are right it can increase the toxicity of the drug, So far and touch wood I have not had any bad blood test reports unless they are not doing the right tests for me, 

      As we all know different drugs affect different people different ways. 

       

  • Posted

    If you can go straight to a biologic in your country I'd go for that...but they are very expensive and many health care systems make it difficult for that reason. Alas we are all our own guinea pigs different biologics suit some people better then others. On/Off is not an option for this disease. See Arthritis Research UK for a good listing of the drug options

    Aggressive early treatment is now advised for PA so making do with NSAIDS and painkillers make work ok but the disease could well be progressing.

    Not being able to drink on MTX is a pain and initially I found it difficult. Eventually I would drink a glass of wine if I was out and about and seemed to suffer no ill effects. Not drinking at home became easy with time

  • Posted

    Hi,

       When i was first diagnosed in 2007, I was given methotrexate and found it really helped, I still managed to drink occasionly and was fine. I was on it for about 3 years and was really better, I could live a normal life again, walking, driving, gardening, etc. As I was so much better I was taken off methotrexate and had nothing, everthing was fine until I had a tumble indoors in 2015 and it all flared up again, going back to rheumatology, she insisted on injections in my knees, the first injections worked ok, until i decided to drive, it all flared up again, I had a second lot of injections in September, which have done nothing, I am living on pain killers until I go to rheumatology and will insist I go on metehotrexate, that was a lot easier although its takes time, I wish I was given that 9 months ago, I might be walking ok now, not relying on a wheelchair. I can't wait to start methotrexate, even though it curbs the drinking, its certainly worth it.

           Good luck.

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