methotrexate makes me really sick

Posted , 6 users are following.

I was diagnosed with ra in May last year a started on methotrexate 10 mg and hydroxychloroquin, slowly increasing the methotrexate to 20. I had high positive ra factor and anti ccp. the ra factor was 501. the crp was lowish at 7. I have felt really sick most of the time, but it seems to be worse when I add the hydroxy. This is now the third time I have tried it, its now been 3 weeks.  i just think when i just take the methotrexate i am less sick, and the day after i feel slightly better which does not make sense to me as most people feel ill the next day.  Also I dont take any painkillers is that normal, i just get burning in the feet. is there something i can ask the rheumatology nurse on wednesday, i just want to feel better.  thankyou for this forum

 

0 likes, 8 replies

8 Replies

  • Posted

    Hello Ellice

    I wish I had a better response for you other than I tried Methotrexate and had to come off of it due to how sick it made me feel. And I have a strong stomach! I'm on the generic for Arava (a DMARD just like MTX) and it doesn't effect me at all like MTX did.

    The biologics are something I'm not willing to risk because I've had a past infection of Hep B as a kid as well as adult chicken pox a few years ago (the sickest I've ever been in my life with that I might add!) and the biologics can re-trigger viral infections like those, so I'm kind of stuck. 

    I think everyone would agree that everyone reacts differently to all RA drugs and it's not unusual to try several to find what's right for you. If your combination isn't working for you, don't be afraid to talk to your doctor and ask about trying something different. 

    We all want to feel better, believe me! I was diagnosed a year and a half ago and my life changed completely. I wish it would all just go away, but we're stuck with what we've got, so we have to be proactive and really work with our doctors to get a drug/drug combination that works for us. Good luck to you and I hope you find the right path!

  • Posted

    Tell the nurse the same as you've said here. If you were OK/felt acceptable with just the MTX and it is worse with hydroxy then they may try another DMARD to go with the MTX, or they may try something different. There is a list of medications they work through, starting with the cheapest and most used which tends to be MTX. Many people are fine on it and it is enough, others need more. Others it makes ill, often nausea, and that may be helped by using injections.

    As a tier of the drugs is tried and has to be rejected for some reason they move to the next - which makes sense as if you started at the other end you haven't got as many to go next. Sometimes the problems settle down with time so it really depends on how bad you feel and how much time you are unwell - it isn't worth it if you spend 3 or 4 days a week unable to do things is it.And of course the drug needs to be seen to manage the symptoms since that is the really important thing - to stop the damage being done to the joints which relieves the pain as well as stopping the disease progressing and causing damage.

  • Posted

    I gather you are on oral methotrexate. You can have it by injection. Itcomes in prefilled syringes with small needles, and you may be able to self administer after being taught. My mother had similar problems to you with oral Meth, but tolerated the injections well
  • Posted

    thank you for the replies. it turns out the appointment has been cancelled. so i wil keep ihe info in mind till i go.  i actually think i have had this quite a few years, but because the pain is so limited i just did not know.  unless of course its another autoimmune condition. thank you. great forum

     

    • Posted

      I hope you got or will get your appointment rescheduled. Ask about folic acid or leucovorin to take along with the methotrexate. It helps a lot. I also asked for zofran, only to take the day I took the methotrexate.

      So, I would take methotrexate & zofran Thursday night at bedtime, leucovorin on Friday. Friday I was tired & sluggish & survived on pretzels but could still work. Saturday was a wash.

  • Posted

    Hi ellice,

    ​I'm sorry you feel so sick. I was on Oral Methotrexate for 2 yrs and would have stiil been on it if I hadn't moved. Now on 25mg injs every week with no sickness - it feels amazing. Hope this gets sorted out for you'

  • Posted

    Are you taking 5 mg of folic acid the day before methotrexate (mtx). If you don't mtx can make you feel like you just had chemo. Hope this helps.
  • Posted

    thanks for all the help on here. Thiught I would give a quick update. The NHS must be under pressure a bit, because I have had thr appointment cancelled twice, and now not due to see rheumy nurse until July. The good news is that I am feeling better and have been able to take methotrexate weekly and hydroxy (only 1 tablet, 200 daily) without feeling so sick.  I am going to gp tomorrow and wondered if i should ask doc to look at any changes, bloods are all normal at the moment. I still wonder about this condition, at one point I felt so rough i could do nothing, but even then i did not need painkillers, in fact i have not taken a painkiller for 10 months is that normal, my diagnosis was definate high positice ra factor and anti ccp. ellice

     

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.