I’ve just had a call from my MS nurse telling me to stop taking Avonex for a month because of a low white blood cell count (2.6). She told me that when my count returns to ‘normal’ they will let me try it again but if the count starts to go down again I will have to move to Copaxone.
I’m worried because although I’ve only been taking it for 4 months, I feel settled on it and get no side effects. I don’t want to have to stop a treatment and start from the beginning again
I was on Avonex for 10 years and total white blood cell count - and neutrophils in particular - dipped below normal a number of times. I do not know what my levels were (although I’m sure they weren’t wildly out of normal) and it was always just a matter of having a follow up in a month or two to check they had drifted back into normal range again, which they always had. There was never any question of stopping treatment - but, as I say, I don’t know what my levels were and I don’t know what yours mean either. Just so you are fully in the picture, it might be worth talking to them about what your levels are and what that means.
I’m sorry that your treatment is being disrupted - that is a real shame when you were getting settled into the routine. I hope it all settles down for you soon.
Hi, I am on Rebif and my white cells went down to 2.3, so had to stop fr a month. Back on now but on half dose and last weeks blood showed a drop again. Ms nurse said I’ll probably have to stop if it drops again (and platelets dropping too). Like you I had no side effects so the thought of stopping treatment is frustrating. Hope you find a solution. Lilbill
Like lilbill, I’m on Rebif and White cells and platelets have gradually gone down over the 2 and half years I have been taking it to well below normal and I am now on rebif 22 - have been for nearly 4 months. Last blood test showed they were still low so we wait until next test in a couple weeks. Frustrating because , as above, no side effects and no relapses. It suits me in every respect bar my blood count. So who knows- I may have to go on to copaxone! Drat! I wish you good luck and I do hope your count comes back to normal. You are not alone in this predicament! Roger
Thanks guys, it’s good to know that I’m not the only one!!
Alison, I know that the normal range for wbc is between 4 and 11 and it leaves us open to infection when it’s lower than this but I’m not sure how bad 2.6 really is if you know what I mean and I don’t know if it’s my neutrophils that are low or not! I’m interested in this kind of thing anyway so I’ll probably ask her next time I speak to her.