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Can`t take Methotrexate, anyone taking biologics?

Posted , 8 users are following.

linda17563
linda17563

My sister has had horrible results from MTX, so next week think the Rheumy will be offering biologics, what can she expect within reason, are they better tolerated, and are you closely monitered?.  Mtx made her very ill after just 2 doses, and affected her liver reading quite badly...Would be interested to know how other people with RA have found them....Thank You

0 likes, 16 replies

16 Replies

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  • lesley91928
    lesley91928 linda17563

    Posted

    Hi there sorry too here ur sister can't take mtx I've been on mtx.For a year and half now haven't had any problems so far I only take mtx and frolic acid and painkillers just now they put me on a few different meds but the make me I'll so I have stop them I. Hope u find something that works for ur sister let me know how. Ur sister gets on ☺☺☺
  • bill12447
    bill12447 linda17563

    Posted

    Linda

    I have been on biological for about 12 years, they have been amazing for all of that time, right from the day after I started with infliximab Iam now on etanercrpt, I too could not tolerate mtx

    Hope this helps

    Bill

  • ama38049
    ama38049 linda17563

    Posted

    Hi Linda, sorry to hear about your sister. I am on biological but had to stop it now because of abnormal blood results (liver enzymes too, small world...) - most probably not due to biological but some silly antibiotics that I took, but still - until the results are not back to normal, I am off it. Overall tolerance was reasonable. Hope that your sister will find whatever she will be prescribed fitting and beneficial. 
  • mrsmop
    mrsmop linda17563

    Posted

    Hi Linda, I'm sorry your sister has had a bad time with MTX.  I don't have RA but was on MTX for 20 months and had to stop taking it because of the side effects.  My Consultant then put me on Mycophenolate Mofetil [MMF], they tend to start with the cheapest drugs first, MTX for one.  I know a lady with RA who went onto Humira, a Biologic and was doing well.  

    With these diseases, there is a lot of trial & error involved.  I think with all these drugs, the patient is closely monitored. 

    I hope your sister finds something that suits her 

    • linda17563
      linda17563 mrsmop

      Posted

      Thank you to all your replies, It`s the trial and error that now frightens my sister, but there isn`t much choice, and as you have posted patients are closely monitored.  Fingers crossed there`s something to help with the pain, she is house bound now and not that old!  Will post on here what`s offered to her...Thanks again...
    • Light
      Light linda17563

      Posted

      Why don't you go with her to the doctor and stay with her while she's having the infusions?

      The doctor will be monitoring her. The nurses who know all about it will be around.

      If there's any unusual response, he'll simply stop the flow or slow it down.

      Nothing to be nervous about.

      Your sister may be infor a great big beautiful change in her life!

    • mrsmop
      mrsmop linda17563

      Posted

      Don't worry about the 'trial & error', after a while, your sister will take it in her stride.  I know it is an awful situation to find herself in but your sister will be well cared for and she is very lucky to have you too.

      Good luck & I wish you and your sister well.

    • linda17563
      linda17563 mrsmop

      Posted

      I hope she can be helped as I am struggling myself, (fibromyalgia and polymyalgia) so hoping there is more help for her.....Thank You.
    • mrsmop
      mrsmop linda17563

      Posted

      I can't imagine all this stress is helping you, Linda.  Good luck to both of you and I hope things start to look up for you both soon. 

       

    • linda17563
      linda17563 mrsmop

      Posted

      Thanks for that, my sister lives alone so try to be supportive as much as I can, which isn`t physically but advice etc....she sees the Rheumy this morning, so fingers crossed she gets some help with the pain, but I do think these things are all probably genetic....( I don`t tell her it worries me, or she worries about me!!).....rolleyes
    • linda17563
      linda17563 mrsmop

      Posted

      My sister has been told if her liver reading are ok she can try Sulphalazine (spelling?)  which will take a few weeks to have affect maybe, she started on these before and got to taking 3 weeks worth, then they had to be stopped because of other problems....Rheumy wants her to take them for much longer to see if they help....biologics she was told....last resort!  Any thoughts please....thank you
    • linda17563
      linda17563 mrsmop

      Posted

      Sorry have posted to you, but ended up posting to myself...very tired today!
    • mrsmop
      mrsmop linda17563

      Posted

      I'm not surprised Linda, you have a lot going on apart from anything else!

      Here is a page for you to read about Sulfasalazine   https://patient.info/medicine/sulfasalazine

      I know of other people who have taken it for other diseases and haven't had any adverse effects.  I notice it tells the patient to drink plenty of water with it.

      Biologics tend to be very expensive, which is why they come last and may be added to the Sulfasalazine.

      I know of someone who was on Humira for RA, I'm not certain whether she still is.

      I hope you are resting a little, Linda.

       

  • Light
    Light linda17563

    Posted

    Just wrote a long post and lost it!

    Yah!

    So to repeat quickly... I took both Actemra and Rituximab.

    Had side efefcts with Actemra within the first 3 weeks and then it went smoothly for eight months.

    4 years later, last March, took Rituximab. Smooth sailing so far.

    Your sister may be one of the lucky ones if you're in the UK and she's getting it on the NHS.

    Be aware, as Mrs Mop says, that every body is different and reacts differently, often to the same drug taken at different times. So it is highly experimental still.

    But when it works, boy does it work!

    All the best!

    • linda17563
      linda17563 Light

      Posted

      Thank you, will post on here what`s offered next week.!...
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