Forum

Cladribine

Hi does anyone have any experience of using cladribine, side effects etc. I have read about this drug but I would really like to hear from anyone who has personal experience of trying this medication. Thank you. Sue

I would be interested too.

I had a meeting with the MS Nurse last week and given a leaflet to read about Cladribine, with bloods and urine sample taken, as they are suggesting I am given it.

Hi Whammel suggested I look at Shift ms where there are some posts on Cladribine. Sewingchick mentions that she had an adverse reaction to Cladribine but I did find some positive comments. Sue

Thanks, will take a dig around on Shift MS

Hello,

There are two versions of Cladribine.

Merk the German pharamceutical company have recently had an oral version authorised by NICE and I think it is only for people with RRMS. This was developed using the injectable version as described below but there is a price tag that goes with it.

There is also a version authorised to be prescribed for people with Hairy Cell Leukaemia which dampens down progress of SPMS. It is given by a small series of injections. It can be obtained off-label via the Barts MS team. Hopefully it will be trialled later this year, look out for the MS-CHARIOT trial but another £1,000,000 funding is needed to run a phase III trial. The advantage of this drug is that it is cheap as chips.

Try putting ‘cladribine’ in the search box on this site to read about my experience. Too depressing to describe in full here.

Sewingchick I have read up your experience.

I had a call a couple of hours ago to start the treatment next Monday,

So here’s hoping my experience goes OK.

Hi I hope all goes well for you when you start the cladribine injections. Please keep us updated on your progress. Thank you. Sue

Sue,

I hope to do regular updates, going to put something in my diary to remind me

Hope it goes better for you than it did for me. Will be really interested to hear what happens.

Had a call yesterday to say they are going to have to postpone my treatment while they await an answer.

They had done a blood test and one of the results was a little bit outside the lower range so they are trying to find out from my local hospital whether or not to go ahead with the treatment.

Just a waiting game now.

Hi, that is disappointing I hope your trial can go ahead. I am waiting for MRI’s before a decision is made to try cladribine. Sue

Hello,

I’m in much the same position as Sue84. Got a lumbar puncture at the end of the month.

I will write about the whole process in a series of blogs on my website, aid4disabled dot com. Some of you might have already have had a look at it and read about my MS journey.

Talk soon,

Patrick

hi I’m starting cladribine soon and set up a facebook group UK Cladribine users(mavenclad) tabs/inj

Been to see the consultant today as they have heard back from my local hospital and everyone is happy to proceed with treatment so they are now putting me forward again. Now a case of waiting for the treatment dates to come forward.

consultant physician diagnosed with ms in last month

this was terrifying during relapse but improved after steroids

interesting and scary to be on other side of medical desk

starting cladribine in January and was interested to read patient experiences

fingers crossed

I’ll start in January too…

Have you previously tried other treatments and if so how did you find them

Very interested in patient experience rather than medical or pharmaceutical sales pitch

I’ve been on tecfidera for just over five years. No side effects and i wasn’t very happy when i was told to consider something else because two new lesions had accumulated over two years. Not too much really but i also had two bouts of trigeminal neuralgia so tecfidera had started to lose its effectiveness. I’m a bit apprehensive to go ahead with cladribine (mavenclad) but I don’t have much choice. I’m keeping so well so it’s difficult sometimes to realise the fact that i have a disease that could floor me properly any day.