Hi all, had a blood test about a week ago got the results yesterday and informed I'll need another blood test and a Bense Jones urine test, apparently my white blood cell count along with other readings have dropped out of the normal range, so it could be the Benepali injections are working too well, I've been on Benepali about 5 months this is the first time there's been a problem, anyone else had this sort problem with biologicals? .
Hi Martin, yes, I was on Humira and Methotrexate about 2/3 years ago and felt fantastic, amazing. Then I got a phone call to say my neutrophils had dropped significantly and to stop both the Mtx and Humira with the predictable result. When I did restart them with a reduced dose of Mtx things improved slowly but I never got the same control again. I’m now on Benepali but no Mtx. The Mtx has affected my lungs. I hope you get sorted soon and maybe find my experience useful. Best wishes Carol x
Hi Carol neutrophils are a type of white blood cell am I correct ?, mine have dropped below the normal range, the practice nurse said quite a few things have dropped below the normal range, anyway having another blood test and Bense Jones urine test and seeing GP, I looked up Bense Jones urine test and it's done relating to multiple Myeloma scary stuff, but I think it's just the Benepali lowing my blood readings to much, thanks for your reply, will let you know outcome of what GP says.
Yes, a type of white blood cell. At its lowest mine went to 1.3. I really hope all goes well with your Bense Jones test. You mention your practice nurse and GP, is your Rheumy aware of these latest results? Very best wishes. Carol.
Hi this all happened last Friday blood results etc I'm seeing GP and I'll ring Rheumy its not easy to get in touch with Rheumatologist you ring them and they get back to you sort of thing, my white blood cell count was 3.4 and Neutrophil 1.75, not hugely low I suppose.
Hi Martin. Sorry to hear this. I had problems with low white cell count and neutrophil count when I was on methotrexate. I would receive the call to stop taking it, then they would wait for the counts to recover and put me back on it. Repeat! Once I was put on anti-TNF, blood counts have remained ok. Are you taking MTX with Benepali? You must be so frustrated. It is horrible to experience the pain creeping back after you have had it under control for a while. Hope you get sorted. Esther
They are low and I was told they move the goalposts for people on biologics because of the infection risk. It’s good to know your practice nurse is on the ball but I suspect your Rheumy will get back to you promptly in these circumstances. My GP is very conscientious and I see him regularly. I have found some things are outside his experience though. Why we have experts! I will be thinking of you. Avoid busy places with lots of bugs for the next few days!
Hi Martin
Sorry to hear about your blood test results. I know you have said this drug was really working well for you. But don't think the worst since they ordered that urine test.
Just could be a precaution and they may just hold the medication for now until your white counts come up and then restart. I sure hope so. Try and stay positive--I know easier said than done. My thoughts and prayers go out to you
Hi Esther thanks, no not on methotrexate tried it once with bad results, I'm just on Benepali and Sulfasalazine, been on the Benepali about 5 months no problems till now I'm seeing GP and more blood tests.
Thanks Carol, I'll keep you updated on issue.
Hi Gloria thanks, seeing GP next week, I'll see what he thinks.