Cocogamol, methotrexate and blood test liver function

pilgrimchris
pilgrimchris Member Posts: 27
edited 11. Jul 2016, 02:54 in Living with Arthritis archive
Hi, has anyone has any experience of starting taking cocodamol with methotrexate and it causing a liver function problem on a blood test? I ask because I've been doing alright with methotrexate (this time!) and have been on 20mg for 8 weeks now without an y problems until friday when i've had a problem with the blood test and been asked to stop the methotrexate and get a re-test.
I felt i was finally starting to feel some benefit and am devastated at the thought of stopping, help please?!

Comments

  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Sometimes these blips occur and that's all they are – blips for which you might never find an explanation. They can happen with any DMARD, with or without cocos, and sometimes people can re-start the meds with no problems.

    I would doubt that adding in the cocos is the source of the problem as many of us take both.

    You won't necessarily have to stop the meth permanently. With luck, it will all die down again but liaise with whoever told you to stop it and have more bloods done and be guided by them. I hope it all sorts itself out quickly.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi Chris , it happens with Methotrexate , I had similar trouble but mine was solved by my consultant increasing Folic Acid from one 5mg tablet to six 5mg tablets a week , my alt results went from 170 back to normal & stayed there for over 10 years , increasing folic acid helps with other side effects like mouth ulcers & hairr thinning

    there are other disease modifying drugs that your consultant can offer like leflunomide , I would talk to your Rhumy nurse & ask about increasing your folic acid but take thier advice , & be careful about taking any over the counter drugs because some interact with methotrexate
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
    thanks both, thats helpful to know.
    I couldn't tolerate sulfasalazine due to some side effects and have been on and off meth since november - the 8 weeks at 20mg was my best run yet, hence my disappointment!
    Hopefully fridays blood test will be clear and i'll be able to carry on at the same dose.
    thanks again for the advice and support
  • pot80
    pot80 Member Posts: 109
    edited 30. Nov -1, 00:00
    A similar thing happened to me when a GP wanted to refer me to the rheumatologist because he thought the liver function figure was too high. The rheumatologist replied (with a copy to me) that he had reviewed all my blood test figures and the slightly high one gave him no cause for concern and I certainly did not need a consultation.
    Interestingly though he did reduce my dose from 20 down to 15 and since then I have had a couple of results within a cats whisker of the one thought to be high. It is comforting to know that somebody looks at the results because I never phone the surgery for the results but wait until my next blood test in three months time to see what they were.
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    pot80 wrote:
    I never phone the surgery for the results but wait until my next blood test in three months time to see what they were.

    I, too, trust my GPs to let me know if anything is amiss – and they do.

    I now have 3 monthly bloods but have to hand in my little blue book of results every month when I order my repeat meth so it gets updated then.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Pilgrimchris.
    I have had very much the same experience.My rheumatologist says it's fine to take cocodomol with Methotrexate(I take soluble cocodomol).But due to an elevated ALT reading of 170,I stopped the Meth for a couple of weeks.After a few weeks of being back on it I have yet another elevated reading of ALT 107 and the doctor yet again called last Friday and told me to discontinue the Meth pending the results of further blood tests.In reality,we can only be sure if we stop taking the cocodomol and get normal readings.I suppose that's the only way that we can be sure-it may be that the Meth alone is responsible,and that it's just not for us.I don't drink any alcohol at all so it's not that.
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Pilgrimchris,
    Sorry-forgot to add.Methotrexate,other than the liver function results,has been great for me.I take 15mg each week and really noticed a difference so like you,I am really disappointed.
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
    Thanks for all the replies. I stopped the cocodamol anyway as it wasn't making me feel well and will stick to paracetamol for the time being.

    I had a further blood test which was above normal but lower than the previous result so i was expecting to be told to carry on with the meth. I then got a call telling me to stop (and wait until my next appointment with the consultant which is only next week fortunately).

    Its so frustrating that i've been using sulpha and then meth since August last year and have still had no improvement (the swelling is under control but i thank the NSAID for that). The pain, stiffness, fatigue is slowly killing me.

    Mind you I wouldn't be surprised if the consultant restarted me on the meth again next week (I am tempted to take it this week to keep the continuity going). I've got a busy job and 3 kids and can't afford not to be in better shape. I'm also worried they'll try me on a third DMARD and I'll be back to waiting 12 weeks+ to see if there is any benefit. This is never-ending!!!
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Mind you I wouldn't be surprised if the consultant restarted me on the meth again next week (I am tempted to take it this week to keep the continuity going). I've got a busy job and 3 kids and can't afford not to be in better shape.

    No, don't do that. Consultants don't tell us to stop meds on a whim. It might be that, if you resume now, it's likely to go pear-shaped again whereas, if you give it a bit more time, things will resolve enough for you to recommence it.

    You may feel you can't afford to be so bad but, self-prescribing could make things worse. I do hope you'll be able to re-start the meth but, at the end of the day, despite work and kids, it's your long-term health that counts. We have all felt, at times, that we didn't have time for arthritis. Arthritis is deaf and doesn't care.

    Be gentler with yourself. If they're old enough, get the children to do some routine tasks. It's in their own long-term interests.

    Please let's know how it goes next week.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Pilgrimchris,
    I am in a very similar position-Meth just stopped again for the second time due to elevated ALT levels.Meth was working for me and my joint pain and generalised pain had improved dramatically.I will follow your outcome with interest.I am taking nothing now and will wait for the results of a blood test in 10 days time.I know a few people on Meth without raised liver enzyme levels.Is this a common side effect?It worries me that nobody I know has had this problem with it.
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Melanie, - Raised ALT levels can be an unwanted side-effect of (I think) all or most DMARDS and biologics. Sometimes they settle down again and sometimes a different med has to be tried. Just because one has caused raised ALT levels doesn't mean to say another will. It's all a lottery because we are complex creatures with different genetic and environmental factors influencing us.

    On the whole most people will benefit from meth without any very troublesome side effects which is why is has been passed as a safe drug to prescribe. But there are no guarantees and no knowing in advance who might get side effects. Hence the importance of our regular blood tests which highlight potential problems before they become serious. To us, they are a regular nuisance but these regular nuisances can save us from all sorts of medical issues.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Bit of advice please.Am seeing the rheumy nurse this Thursday.Am not taking Meth at the mo,due to two blood test results showing raised ALT levels.Although Meth really has helped greatly with joint pain and generalised pain,I really don't feel that I want to take it any more.I don't like the effect it is having on my liver,and feel that if I start it again,exactly the same thing will happen-raised ALT level.Will my rheumy nurse really suggest that I take it for the third time?Or do you think that something else will be suggested?I don't drink alcohol at all now,but failed to tell the consultant that I used to be a very heavy drinker for decades-something that I am not proud of now.I feel that maybe I have a pre existing liver condition,maybe cirrhosis even,and this is why my liver cannot tolerate this drug.I didn't purposefully withhold this information-I was never asked if I had been a drinker.I was only asked if I drink alcohol now,and at the time I assumed this was because of alcohol's interaction with the drug,not due to its effect on the liver.Any help or opinions please?
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    I do understand your reluctance to start meth again. One bout of raised ALT levels can just be a blip but a second one must set one wondering. However, that must be balanced against the improvements it has made with the arthritis.

    Will you be asked to try again? I don't know though my understanding is that all DMARDS and biologics can affect the liver so the only other alternative might be to not take any and so to give the disease full rein which would be far from ideal.

    I've always believed that any info I can give the docs will help them to diagnose better and choose my best course of action. And I would suggest that, when you see the nurse, you explain your background. I really don't know whether or not that would make any difference to how the meth might affect your liver but I do know, for sure, that you should not be ashamed of your past only very proud of yourself for turning things round. That's a very big triumph.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Stickywicket-heartfelt thanks.I will tell my rheumy nurse and your wise comments have made me feel more confident to do so.I will let you know anon :splash:
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
    The impression i get from the consultant and from other people is that people don't really understand what causes raised ALT levels. I would have thought if historic drinking was important they would have asked. I also believe that the liver can recover pretty well anyway over time.
    I've had to stop the meth three times now but have restarted each time. This time the consultant offered me leuflomil (?) but i didn't want to start something else after my bad experience with Sulfasalazine. She was happy for me to restart meth but did a more detailed blood test and is arranging for a liver ultrasound in the next week or so to double check. They might do this for you?
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi Melanie , few questions
    Do you know what level your ALT results was , over 130 is high but people with severe liver problems can be over 1000 so its good they keep a check on us before long term damage is done

    what level of Folic acid do they give you , I was on one 5mg once a week & had problems with reaised ALT , they stopped Meth for a year & then tried it again & done the same with Alt of 170 , & then tried six tablets a week (5mg) & since Alt been normal for about 10 years

    there are other long term problems with my liver & have stopped taking Meth now , so think you should tell your consultant & maybe they do some test to check your liver before going back on meth
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    pilgrimchris , after stopping Meth & told they was delaying my Biologic rituximab , because I need total knee replacement , they started leflunomide & I have done pretty well on it my CRP is low , you realy should give it a try , still take Sulfasalazine but its never realy worked & been on it for 20 years ,

    I cant take any anti-inflammatories , with RA its about stopping joint damage & you can expect to live with RA for a long time , so look after your joints the best you can & hope at some time they find a treatment that controls it
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
    trepolpen wrote:
    pilgrimchris , after stopping Meth & told they was delaying my Biologic rituximab , because I need total knee replacement , they started leflunomide & I have done pretty well on it my CRP is low , you realy should give it a try , still take Sulfasalazine but its never realy worked & been on it for 20 years ,

    I cant take any anti-inflammatories , with RA its about stopping joint damage & you can expect to live with RA for a long time , so look after your joints the best you can & hope at some time they find a treatment that controls it

    thanks, that's reassuring. I guess i was scared off trying something else as the sulfasalazine made me feel really unwell - sick, dizzy, depressed etc and I ended up having 3 days off work. I've just started a new job and felt i couldn't afford to potentially be badly affected by side effects again. The consultant also said that Leflunomide has a long half life and if i had to stop then i'd have to drink some other medicine three times a day to flush it out my system.
    Its frustrating as the methotrexate i've been fine with (other than the occasionally raised ALT), and i've definitely felt improvement in my PsA.
    Maybe if i can't stick on the meth this time then I'll give the leflunomide a go then!
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
    Pilgrimchris thank you for your interest.My ALT levels on Methotrexate have been 170,155 and 105.I saw the rheumy nurse last Thursday and she has discontinued the Methotrexate and I am glad,although it really did help me with joints and pain.I told her all about my history as a former heavy drinker and she didn't necessarily see it as the cause of elevated ALT levels,although in my simple head,it would make sense that a damaged liver would be less able to tolerate certain drugs.I would like to have a liver ultrasound but she dismissed that idea.I am waiting for the results of a blood test and then I am to try sulfasalazine.

    Trepolen.Thank you also for your interest.On Methotrexate I was prescribed 5mg folic acid once a week.May I ask,what kind of long term liver problems do you have,and whether you consider Methotrexate contibuted/caused these problems?

    Best wishes Melanie.
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Melanie17 wrote:
    Pilgrimchris thank you for your interest.My ALT levels on Methotrexate have been 170,155 and 105.I saw the rheumy nurse last Thursday and she has discontinued the Methotrexate

    Trepolen.Thank you also for your interest.On Methotrexate I was prescribed 5mg folic acid once a week.May I ask,what kind of long term liver problems do you have,and whether you consider Methotrexate contibuted/caused these problems?

    Best wishes Melanie.

    My ALT went up to 170 & they stopped Mtx for a year & when I went back on it it done the same thing & increasing folic acid to 5mg six days a week sorted the problem & my ALT went back to normal

    as for the my Liver , I been on Mtx since 1998 with a break of 12-24 months , they are doing studies of effects of people taking it for a long term :ie 20 years & checking for fatty liver & fibrosis at early stage so not to damage our livers , mine was raised a bit so took me of Mtx & onto leflunomide which I am finding works alot better , been on sulpha since 1996 along with Mtx & Biologics & steriods