If you have to quit Tec, what are your options then?

[Guzzy]

Hi
my lymphocytes are not looking good at 0.6 and I am starting to get ill a lot with viral infections.

This happened me before on Rebif and eventually I had to stop it.

I was on Copaxone for over 13 years but had extensive lipoatrophy and I felt it wasn't really working in the last few years.

If you come of Tec, what can you go on to then, given the lympocyte problem?

[Kimba22]

Hi Guzzy,

I'm sorry. Maybe you could try Tysabri? I went on it after my counts crashed on Gilenya and had life threatening infections. I had to wait until they rose again, but I've been on it for 3 years and haven't had any problems with my wbc counts.


Best of luck

[Guzzy]

Thanks Kimba
I hadn't even considered Tysabri.

I'm just hoping so much that the counts will rise but I have a gut feeling they won't...mine are naturally low anyway. My super-healthy Mum has very low lymphcytes too.

I'll hang in there until the next set of bloods and see what Mr. Neuro says then.

Thanks x

[MrsChip]

Im in the Same Situation

Hi, My Lymphocytes have been 0.5 for 2 successive bloods over 3 months. More worryingly, my total WBC started pre tec at 6.4, was 3.7 at blood test 1 six months into Tec, and 2.6 9 months into Tec. As a total WBC of 2.5 or less is considered dangerously low, if they dont rise by my next one in January I will be taken off Tec. Like you, inteferon made my WBC bomb and Copaxone did the same. On my third infusion of Tysabri I got a massive allergic reaction so was tols I can never take that again. So if my bloods dont improve, what will i do? Gilenya will just go the same, as its clear the my WBC cant cope with a frequent immune modifying drug. I probably need a monoclonal antibody drug but Campath is only for newly dx in UK and Im 24 yrs in. So looks like i will have to wait til Ocrelizumab is licensed in 2017. I so wish that I wasnt one of the "Allergic" patients as they call us. You have my empathy xxx

[Guzzy]

Hi Mrs Chip
I'm sorry you sound like you're in the same boat as me.

I had a look at my WCC and it's so similar to yours; it started at 6.7 and has now fallen to 3.5, which is not dangerously low, but I am wondering what the next set of results will bring. I'm not feeling very well to be honest, worn out and tired.

I'm 17 years in and I don't know what else the neuro will suggest but like you I think most of the remaining options in Ireland will decimate my WCC too.

If I'm taken off everything I'll take ALA/Acetyl-L-Carnitine, Pycnogenol and Vitamin D religiously, just in case. I know I have the 'bad' gene that predisposes to more rapid and severe progression, so I would be terrified to be off everything.