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ADVICE AND PERSONAL EXPERIENCE PLEASE

not been on here for ages (just type into Google… “Gary Dimmock MS Sussex police” and you’ll get the idea… I’m now retired and still fighting this damned MS… My legs are getting worse and mobility poor …just been taken off Tecfidera owing to low lymphocytes levels… Just had another MRI so the neuro can discuss further treatment options…anyway I’ve been given some literature on MAVENCLAD …GILENYA …LEMTRADA… … anyone any experience of any of them

Hi Gary I don’t have any personal experience but there is an active site on Facebook for Mavenclad. You will also find patients with experience of these drugs on Shift.MS. Good luck with whatever drug you decide to go for. I have PPMS so there is no treatment available on the NHS although I have been waiting for months to see if I can be treated with Mavenclad on compassionate grounds. Sue

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Hi Gary,

I have experience with lemtrada, due my second round the end of this month.

I have nothing but good things to say about it :slight_smile:

Laura

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Hi gary i remember reading about you, but it seems now when you google there is another it comes up with copyrght notice.

A lot of groups on facebook run their own groups for each of these drugs. You might get more help for each specific drug. the thing is though everyone reacts differently to these drugs. so what might be great for one is no good for another.

I have seen a lot of good points about Lemtrada.

I hope you find something which will suit you. I have PPMS too so not faced with choices of meds.

Like I said the one i seem to hear more about is Lemtrada i know one of my MS buddies was put on it, and is doing well. She liked it as its a 2 tier treatment one for about 4 or 6 days cant remember which then nothing for another 12 months She is doing well actually. Had side affects but nothing much or anything delibitating.

she belongs to this group.

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