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Campath is brilliant, and it works! BUT...

I had Campath last year. Having had ‘agressive RRMS’ I was open to anything…However, it really worked! I have felt great for a year without a single relapse. This is something I’ve never experienced since diagnosis in 1998.

Sadly problems arise just when you think things are getting better…, the company are pulling the drug, renaming it and charging LOADS more.

At the moment it costs about 1 or 2 thousand pounds. Soon it may cost £50,000!! Which PCT will pay that? It is outrageous that our health comes, as ever, down to costs! How much more will each trust have to pay if we continue to go down hill and become more ill and dependent on others…

I think I’m lucky and will get my second and therefore last dose in a couple of weeks…but what about everyone else that this drug could/would/should help?

I hope others fight for their right to get this and thus have a better future to look forward too!

oh heck

i’d looked into campath before my dx or alemtazumab as it was called then.

i’m not a candidate but at least it was comforting to know that there was something out there.

anyway i’m pleased for you

carole x

Thats so unfair

I’m on Tysabri over 4 years now it has worked wonders for me and I’ve had no relapses since I’ve started (I’d one every 4 or 5 weeks before) It would be so hard If it where stopped because the price went up I know it may not be the cheapest of the DMD’s but as my neuro said once it was costing much more to keep me in hospital with the relapses I was having almost everyone of them put me in hospital and the services it took to get me mobile enough to get out home again.

I really hope something works out for you.

Mark.

I’ve had MS for (around) 14 years I’m pissed off! What is Campath - and where do you get it? I ‘used’ to be involved with athletics - now I just sit and watch? (but not by choice!)

Marcus. (was once a ‘black-belt in Tae-kwondo’)

Oh that sucks. I am so sorry. I was in a similar situation a year ago as well. I started on Cladribine here in Australia and then because it wasn’t approved in the EU and by the FDA Merck pulled it from the market leaving 150 if us here in Australia stranded half way though our 2 year treatment program.

I know how gut wrenching it is when you finally find a medication that gets the MS under control and then it is taken away from you for reasons beyond your control and for financial reasons at that. Where does our actual health come into it?

I hope you find a suitable replacement soon. I am hanging out for BG12 which hopefully will be approved here in November. My neuro is planning to get me on the Product Familiarisation Program with the drug company so I will be able to get it for free.

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1679/

All the best,

Belinda

I went to a lecture about a year ago where it was announced that this was going to happen. It was also said that it would be pulled from its then licenced application which as I recall was leukaemia.

We are getting to the point where if something is found to be effective but not licenced then you can not have it for that reason.

If something is licenced then it is too expensive so you can’t have it for that reason.

I see it has now been pulled altogether.

http://www.mssociety.org.uk/ms-news/2012/08/drug-reporting-positive-results-ms-temporarily-withdrawn-market

david - l looked at the link you posted - lt is hoped that enough ‘Campath’ is in stock to keep people supplied until they get it licensed for MS use. So there is hope for those who are on it.

l have SPMS - so - as always - the wrong type for this treatment. But l have done a bit of research into dmd’s - just in case - and Campath is the one that l would have liked to have tried if l was RRMS.

l shall keep my fingers crossed for all who are on it now - and for others who would like to try it.

F.

I think as ever it will depend on what PCT’s decide, the problem may be that even if there is sufficient then stock PCT’s may still use the fact that has been withdrawn as an excuse to take people off it rather than run the risk of being forced to fund at the increased price if it is in fact re introduced.

As for effectiveness then the only two people I have met using it have been delighted with the results and of course that is exactly the people who may be taken off a drug they found effective and were prepared to run the risks of taking it.