Low Platelet

Mavic Member Posts: 12
edited 21. Aug 2019, 14:14 in Chat to our Helpline Team

I have been having Toxcilimab infusions now for the bast four months. Suddenly today I had a call from my rheumatology team saying my platelets are low. Has anyone else had this problem, and how do they treat it?

Phil Watkins


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Phil and welcome to the Versus Arthritis forums.

    I'm sorry to hear of your problems taking tocilizumab for your rheumatoid arthritis. Your rheumatology team are obviously on the ball and have flagged up a problem with your latest blood test.

    We have an informative page on the website that may help understand some of the problems that arise with taking this drug:


    Hopefully you will also get information from our members who have personal experience of taking tocilizumab.

    Do come back after your next meeting with the rheumatology team to let us know how you get on.

    Best wishes
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am a forum member. I've not had that particular med or phone call but when rheumatology have contacted me there has always been a course of action for me to take, once a repeated blood test (I was on holiday and they had set it all up with a local GP practice), on other occasions appointments but always advice as to what they wanted me to do. It seems odd to me that your department has left you hanging in this way - in your shoes I would ring them and ask for clarification and advice. Good luck. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mavic
    Mavic Member Posts: 12
    edited 30. Nov -1, 00:00

    I just had a telephone contact with my rheumatology team at 9am this morning saying that I have to have another blood test and book me in for next Wednesday.

    To be quite honest, I think I might have the same problems next month as I have read about the treatment and low platelet count.
    Fingers crossed I hate it after starting treatment then stopping as I will come down with a drop. My body will hurt 😔
  • helpline_team
    helpline_team Posts: 3,297
    edited 30. Nov -1, 00:00
    Hi Phil
    I'm pleased to your rheumatology team have been in touch and your repeat blood tests have been arranged.
    Once the results are confirmed things should become clearer in terms of a treatment plan moving forwards. As DreamDaisy says the Rheumatology specialists will advise you on a course of action and this would be your opportunity to raise your concerns with them.
    We've got our fingers crossed for you too!
    Best wishes
    Helpline advisor
  • Mavic
    Mavic Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks for your help guys. I happy I don’t feel alone.