Hello Mr Grumpy
Me too. Lymphocytes down to 0.4 in September after 6 months on it. Repeated test October and November. They didn’t recover so stopped the drug in November. I’ve been having monthly blood tests since then and the lymphocytes are very very slow to recover. They are currently at 0.6, having gone up to 0.5, back down to 0.4, then eventually up to 0.6. I’m due for another test this Friday.
From what I was told, once they go down to 0.4, it’s not very likely they’ll recover whilst you continue with the drug. But of course you may be the exception.
The major problem will be that even if your levels don’t recover and you have to stop the Tecfidera, until your lymphocytes come back to normal levels (I think above 1), I think the neuros will be reluctant to start you on a new drug.
Depending on how long you’ve been on the Tec, I’d consider stopping if the levels either drop any more, or don’t go above 0.4 next month. Waiting an extra month did me no good.
But, maybe you can start Tysabri when your bloods recover! Or another decent DMD. (Unfortunately I’ve already been on Tysabri and had liver problems, but that’s just me. Useless flippin’ immune system all around!)
Sorry to be the bearer of bad news. Maybe it’ll be different for you. I’ll keep my fingers X’d.
The only bit of good news is that even though my lymphocytes have been low all winter (and I couldn’t have the flu jab because of them), I’ve not caught any colds, or other infections. That had bothered me when I realised the flu jab was out.