Low lymphocyte count and mycophenolate mofetil

Hey everyone. Just wanted to see if anyone on mycophenolate has a low lymphocyte count. Mine has been getting lower and lower, now on 0.6. I am so worried that they will take me off the mycophenolate, it is working so well for me.

Has anyone experienced this? And how low does it need to get before they have to do something about it?

Thank you

Jo

8 Replies

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  • My lymphocyte count is low and has been for years at my last hosp visit they called it lymphocytopenia I have been on Mycophenolate for 6 years now and there has been no talk of taking me off it. My GP monitors my blood tests and reports anything to my Rhuemy my last count was 0.6 but I have been lower down to 0.3.

  • Thanks for your reply. It is so worrying. That's reassuring to know that they're not going to take you off of it. Is it definitely the mycophenolate that causes it do you think?

    Jo

  • thanks for asking this ? joanne

    i'm in a similar position. but in my case this is not due to myco. for many years my lymphocytes have tended to be below 1. before my lupus (re) diagnosis 3 years ago, my gps said this low reading was "normal". now i know it is actually one sign that could've alerted them to the possibility i had sle

    since my lupus (re) diagnosis, my health team watch my lymphocyte count even more closely. of course my low count affects my overall WBC, which is slightly below borderline too. they tell me this combo of low counts needs to be followed v closely - especially while i'm on myco (like you, i am responding well to myco, and i dread having to come off it)

    so, am vvv glad to read tracy's reply, and i hope you'll let us know how you get on with your health team on this

  • Hi barnclown. Sounds very simalar to me. Does sound like it must be the lupus, mine has always been low but seems to be getting lower.

    Really is a great drug isn't it? Tried few of the others which didn't work and made me feel dreadful.

    Jo

  • Yes....am feeling "lucky" because was put onto myco before any other disease modifier. And am, I think, quite a lot older: at 60 am basically seriously grateful to discover a mix of meds that gives me back this much of what feels like a sort of 'lost' adulthood.

    Good luck!!!!

  • I'm so pleased that it's working for you, absolutely great!

    Jo

  • Hi Joanne

    I've got a low lymphocyte count at the moment and I only take steroids. It's being kept an eye on as it can come with Lupus disease activity as well as the drugs so don't panic. I'm glad MMF has helped you, I used to take it and it was the best drug for me and I tolerated it so well.Take CareX

  • Hi mist14. Thank you for your reply. That's really good to know. I spoke to the lupus nurse yesterday and she said the same thing about the likeliness that it's the lupus. It really is the best drug, I had no side effects and worked almost straight away for me, would hate to have to come off it.

    Jo

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