Forum

Protocol for giving Cladribine

Those lovely doctors at Barts have published a new protocol for giving Cladribine. So anyone seeking a cure for their MS can get their local neurologist to give them this drug. Come on everyone, let’s get enough people on this that we can have our own Facebook group!

Only joking really - I know that even my neurologist (who’s a top guy and generally very compliant with what I want in terms of medicines) wouldn’t take responsibility for giving me this. But just in case your neurologist is more forward-thinking, here’s the link:

I am going to post about what happens to me next week, hopefully describing my experiences of getting Cladribine and what happens afterwards.

I just wanted to wish you luck , I did a long post and lost it so hopefully you will see this. Let us all know how it goes. Wouldn’t it be great if this was a cure for you by the looks of it and the figures it could give you a fighting chance . Wishing you well zoe

1 Like

Thank you Zoe. I am getting more nervous as it gets nearer but still hoping it is going to be good for me.

Hello,

I approached the MS Barts health team for off-label cladribine in January this year. I had to go through the usual protocols, brain and spinal cord MRI and a lumbar puncture. In mid May I had a follow up appointment with the MS consultant.

I was told that I am not eligible because there are no active lesions on my MRI scans and there was no evidence of inflamation in the lumbar puncture. There needs to be evidence that my MS is active before I am eligible for prescribing off-label cladribine.

Yes I was gutted, in fact as he spoke to me I felt as if I had just been thrown onto a scrap heap. Then I thought about things on the journey home and actually I felt quite relieved. If the consultant could see no evidence that my MS is active then actually I am lucky.

I might be disabled, I am medically retired, cannot walk unaided and am the proud owner of a Blue Badge but things could be a lot worse.

Yup things could be a whole lot worse for me

An excellent and positive spin on your let down over the Cladribine.

Sue