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Worsening Side Effects after 2 years

Posted , 5 users are following.

robertcosmos
robertcosmos

I have been on 15mg of oral methothrexate (normally Friday evening) for 2 1/2 years and in recent weeks and months the side effects have been getting steadily worse: stomach pain after dose, feeling wiped out for the whole weekend, today dizziness for the first time (assume it is to blame!).  Sometimes I wonder if my right side pain (liver?) is also brought on by the drug combined with stress.  I have checked a few academic papers for the side effects again and these seem par for the course.  Will they keep getting worse over time?  Is there anyone out there who has been on it for longer or as long or do most people come off it after a couple of years due to not tolerating teh worsening effects?

0 likes, 26 replies

26 Replies

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  • Lisa_Batts
    Lisa_Batts robertcosmos

    Posted

    Not very helpful Robert but I've been on it about 2 years now I think. Had terrible side effects to begin with but due to illness had to stop it and restart after about a six week break. Second time around I tolerated it far better. Just became part of life. Felt a bit 'off' the next day and the morning after that but that was it.

    Three weeks ago I took it as usual and it hit me like a bus. Right back to the beginning. Nausea, brain fog, mouth ulcers, stomach problems blah blah. Thought I was a one off but this is week 3 and every time it's knocked me for six.

    Not helpful because I don't have the answer but maybe helpful in knowing this has happened to somebody else.

    26th April I see my Rheumy... My doctor will just refer me there anyway so I'm going to keep a diary and perhaps whoever gets an answer first can help the other?

    I will say I am particularly run down and have a lot of stress at the moment. Also I know it's a heinous crime but I've not been getting my bloods done... For many reasons... So may be time to book one and see if anything shows up there.

    If I get any answers I will let you know.

    Lisa

    • Ever_hopeful
      Ever_hopeful Lisa_Batts

      Posted

      Just to say, my surgery sends me letters saying that if I don't come for monthly blood tests MTX will not be prescribed. You have to make the time I'm afraid smile
    • robertcosmos
      robertcosmos Lisa_Batts

      Posted

      Thanks Lisa

       Very helpful.  I think that stress levels do influence the severity of side effects.

      Will keep in touch.

      R

    • Lisa_Batts
      Lisa_Batts Ever_hopeful

      Posted

      Dear Ever Hopeful

      I know. Unfortunately due to another health problem which has been neglected by the doctors despite my begging for them to help (I've had 8 cancelled hospital appointments on the issue and it has now left me with a lifelong condition because it wasn't treated) I've been very down. Also struggling and it is in my ankle so every time I put my foot on the floor for 5 months now it's agony. Cutting a very long story short I have actually lost the will to go on. Getting bloods done is not only horifically painful to walk there (even though it's just over the road) but due to being so stressed, I've lost a stone in weight too, the last two times I had my bloods done it was a massive chore and then they couldn't get any. I know how important it is but I've just had this 'don't care' attitude.

      Thank you for taking the time to reply. You've nudged me to grow up 🙈🙈 and I will be booking a test for next week.

      Bless you 😘

      Except now I'm terrified!!

      😂😂

      Lisa

    • Lisa_Batts
      Lisa_Batts robertcosmos

      Posted

      Thanks Robert. Me too. Thanks to Ever Hopeful I am just about to ring the surgery for a blood test next week.
    • robertcosmos
      robertcosmos Lisa_Batts

      Posted

      Wow! Sorry to hear of your experience - good for you for pushing yourself - it is very important.  Best of luck.
    • Lisa_Batts
      Lisa_Batts robertcosmos

      Posted

      Thank you Robert

      Bless Ever Hopeful

      It was the push I needed

      Will let you know if anything shows up that could suggest why we both suddenly feel like we've been hit by a bus on MTX 😊😊

  • Ever_hopeful
    Ever_hopeful robertcosmos

    Posted

    I presume Robert is getting his bloods checked...I've had various problems with this drug but generally when I've stopped having any alcohol and upped the folic acid dosage it cleared. I'm on a higher MTX dosage than you and take it at night so that I have a nights sleep to recover. I feel very sick the minute I've taken MTX but the dizziness and pain in my side was due to liver problems and when my doctor saw my blood results he told me to stop taking MTX immediately and for a few weeks. I gradually felt better but it took 3 weeks. My advice to you would be to ring your surgery asap tomorrow but in any case no alcohol & no MTX this week until your bloods are checked and you're given the all clear....
    • robertcosmos
      robertcosmos Ever_hopeful

      Posted

      Thanks Ever!

      I have been getting bloods and am having another due to a borderline reading.  I gave up alcohol 6 months ago after trying to minimise the after effects of low consumption. I got out of the habit of taking folic acid over the summer and that made a big difference so went back on as soon as I realised what I had done!  Will see doc next week.

      R

    • Lisa_Batts
      Lisa_Batts Ever_hopeful

      Posted

      Dear dear Ever Hopeful

      Thanks to you I booked a blood test. Unfortunately they couldn't get any blood (one of the many reasons I stopped going) so I persevered and went back 2 days later and am now waiting for the results.

      I wanted to thank you because reading your responses to Robert and myself made me realise how important they really are.

      Thank you 😊😊

    • Ever_hopeful
      Ever_hopeful Lisa_Batts

      Posted

      I'm sure they'll be fine but my blood results changed rapidly - or so it seemed - so always worth having a monthly test. All best smile
    • Lisa_Batts
      Lisa_Batts Ever_hopeful

      Posted

      I definitely feel better for having them done thank you. At least I know my renal and liver are ok. As for the full blood test the receptionist said my doctor had marked them 'normal......for this patient' which doesn't tell me a lot as they have abnormal readings even for me!

      I will go back next month

      😊😊

      Thank you

  • Sweetypi1
    Sweetypi1 robertcosmos

    Posted

    I just started taking it on Dec. And the side effects didn't start till recently, I also was taking 5mg of predizone everday they gave me some bad side effect I was even getting depress and thinking Suicidal Thoughts I just not going to take them anymore till I see my doctor it really gave me a scared.
    • robertcosmos
      robertcosmos Sweetypi1

      Posted

      thanks Sweetypi1

      hope you're feeling better - sounds terrible.

      l am surprised they did not prescribe a weekly dose.

      R

  • annette25895
    annette25895 robertcosmos

    Posted

    i've been on mxt for 11 weeks and I feel like I have no energy to do anything. Does this go away? i'm seeing the specialist next week and thinking about asking to switch to another medication.Anyone out there experienced this? Sorry to hijack your post Robert .
    • robertcosmos
      robertcosmos annette25895

      Posted

      Thats OK Annette

      sounds terrible - I have not had that.  I shouldn't complain compared to your experience.

      R

    • Lisa_Batts
      Lisa_Batts annette25895

      Posted

      Hi Annette

      This is very common with this drug. Unfortunately it takes 3 to 6 months to know whether the drug is working for you and the side effects are going to lessen.

      I would speak to your Rheumy to tell him how you are feeling though.

      Best of luck

      Lisa

      😊

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