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9 months post lemtrada rnd 1: lymphocytes count still really low

hey all,

i had round 1 of lemtrada back in December 2018. So I’m almost 9 months recovery now. I have a blood test every month and the last 4 have shown no increase in my lymphocyte count. Any ideas how to boost the immune system or is this typical? My nurse is slightly concerned that I may not be able to receive round 2 this December if they haven’t improved. I’m taking lots of vitamins and supplements, exercising, eating well… not sure what else could be done.

Hi Amelia…how low is low? mine were just back in the normal range before i had round 2. has your nurse said what is an acceptable level for round 2? I might be wrong, but dont they drop if you have an infection? could that be the cause? x

Hello

Different drug, but same problem. With Tecfidera, my lymphocytes went right down to 0.4 after 6 months and just stayed there for a year. After about 10 months @ 0.4 they started getting better, then dipped again. It took about 13 months before they recovered to 1 - finally in the normal range. So it may just take a bit longer. But really you need to speak to your specialist nurse.

Hopefully a bit more time and they’ll come back up.

Sue

Hi Hayley, I wanted to ask how you have found your Lemtrada treatment

Hi Hayley, hope ur getting on well with lemtrada, would be great to hear how it doing. I was supposed to start lemtrada in April, then whole thing didn’t happen because my lymphocytes we’re too low on day 1 in hospital, dipped to 0.7. have ended up on tysabri for now but would like to have go at lemtrada if possible. I was originally on tecdifera but taken off it cause lymphocytes went to 0.5 and spent over a year trying to get them back to 1.0, bottom of normal range, would get there and they would go back down again. I asked nurse and my GP what can. I do to boost system GP said that it’s just not that simple as immune system is so complex, so really just about staying healthy balanced diet and avoiding any sneaky uti s. Think a little uti is what dipped my count before me not getting lemtrada, that and being scared silly. So hoping u can try and stay chilled and fingers crossed your levels will sneak back up. Ms nurse will have access to all ur blood test results and you can ask them how your lymphocyte levels have tracked over time, this will be different once uv had the lemtrada and get the actual numbers. Hope this helps. Good luck. Froo x