Last reply 3 weeks ago
Mavenclad

Hey guys! Anyone in the UK on Mavenclad? I have a 5 month wait to see the consultant and my MS is active at the moment.

Once the consultant has agreed I can start I am just wondering what the process is as I know there are tests and Jabs etc… I don’t want to wait too long but if it’s going to take a few months of tests I will have to keep phoning up for cancellations!

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condansmum
3 weeks ago

Hi @hollylb10
I’m in Scotland and I’m about to get all the tests done for my second round of Mavenclad. If I remember correctly, the tests are a chest x Ray, blood tests and a urine sample which were all done by my ms nurse. Once my consultant wrote the prescription it all happened quite quickly- I think it was a couple of weeks before I actually got the tablets. It was really easy to take and apart from feeling a wee bit ropey after the first 2 days,I felt fine🙂 good luck with it!
Anna x


hollylb10
3 weeks ago

Thank you for your reply. I thought I would have to have a shingles vaccine?! Ok so bloods and urine I expected but not a chest X-ray 😱 oh well, needs must!

That’s great you have done well on it so far. I’m one of those people that if there are side effects I will get them 🤣

Do you think it has made a difference with your MS?


gary_bennett
3 weeks ago

i done my first round waiting for the second to second round which should be in June. Also have my third MIR on Monday next. Probably corresponds with my next appointment with my neurologist which will be in June. Which is when he will talk to me about my scan from my lastesr MIR which is next Monday. I had two new legions on my brain and a relapse which seemed to trigger in me bouts of vertigo which were on and off and and double vision which was a really weird for me because that interrupted with all my vocal range. I was dragging and dropping my images all over the place I was. I had obvious issues with my mobility. I didn’t have any issues with taking the drug Mavenclad. Not at all really . Anyway my neurologist prescribed me Mavenclad to me to slow down the MS progression in me. This is what he said that I could hope to get from it. I have a wheel chair and i can get around on my crutches I. I am not in any pain.I can’t walk without the crutches though. If I did then I would not have my balance. I would fall over if I had nothing to hold on to. I hope this answers your question.


condansmum
3 weeks ago

Hi @hollylb10
I’m not sure- I think it has halted progression in that I’ve not had any relapses. I’m still working and I do feel the fatigue isn’t as bad. It’s not got any better but it’s not got any worse so I suppose in that sense it’s doing what it’s supposed to!
Good luck with it- honestly the side effects aren’t that bad. I was on avonex before and I felt worse on that. I was told by the nurse of the company that sells it that I would probably get shingles but I didn’t. I believe it costs approx £2000 per tablet so thank god for our nhs!
Anna x

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