Due to continued low lymphocytes, it is likely that I will have to stop taking Tecfidera due to the PML risk. Just awaiting JCV test before a decision is made.
Looking at the MS Decisions guide, the obvious alternative seems to be Gilenya - but it also has a risk of PML.
Has anyone else had experience of this?
Thank you
Shame that you have to stop Tec, especially if it’s been working well for you. I was on Gilenya for about a year, found it to be a tolerable drug, occasionally a headache and a marked decrease in appetite but saw that one a good thing! I did have problems with my white cell count while on it though, had to stop twice until the levels came back up. I ended up relapsing on it though and made the switch to Tysabri, which 14 infusions later is still working well. I wouldn’t get too worried about pml risks, they are very low. Good luck with whatever you move onto.
Hi Mr Grumpy
I find this a bit odd. I had to stop Tecfidera because of low lymphocytes but there was no question of testing for JCV status first. I was under the impression that low lymphocytes (and perhaps just as or more than as important, low neutrophils) left you open to more infections generally. So once your lymphocytes have gone down to below 0.5, and not come back up to above 0.8, then the advice is to stop taking Tecfidera. Obviously there is a danger of PML if you are also JCV+ but I didn’t think that was the only risk.
But stopping Tecfidera and starting another drug that can lower lymphocytes is clearly a bad idea, so as ssdd said, maybe your best bet is Tysabri but again that will depend on your JCV status. At least now they can fine tune your JCV status so you’ll have a better idea of whether and when to stop a drug where the risk is PML.
By the way, it can take a good long while for your lymphocytes to recover I stopped Tecfidera in November but still have lymphocytes at 0.5.
Sue
I find this odd as well. I’ve started on Cladribine as a DMD. From what I understand, it works by lowering a person’s lymphocyte count. If the doctors have managed to do that for you with Tecfidera, why don’t they just stop there? Til your count goes up again, anyway.
Thanks everyone for your replies.
I think the thinking is that PML is the greatest risk - so knowing about JCV is important to weighing up the overall level of risk.
It’s an interesting point that you make Sewingchick but I think the concern is that the lymphocite count has fallen too much.
One thing I do know is that the attention and support I get from my Neuro, MS nurse, GP and the NHS overall is truly amazing.
I hope it is the same for you and long may it continue.
This forum is pretty good too! Thank you again.
Just for clarity, I’m pretty sure they won’t let you have Gilenya if you already have a low lymphocyte count, because Gilenya would lower it even more.