Has anyone heard of CAMPATH as a treatment for Behcet's?

[Dundee1963]

[xandii]

Hi Dundee,

The only time I heard of this was when a friend of mine had a kidney transplant and it was used then. I have never heard it associated with BD.

Sorry I can't be more help Hun.

big hugs xx

[Zebra]

Yes. I have had three courses of this. What would you like to know?

[Dundee1963 in reply to Zebra]

Thanks for your reply.I was asking because I'd read it was was being used as a treatment for Behcet's and was wondering how successful it had been.Do you know if it's productive for eye related issues- retinal vasculities?

[Zebra]

It is a very effective treatment for hardcore bd that hasn't responded to other treatments. It is aggressive chemotherapy, designed for leukaemia. At Addenbrooke's you have a two day course with six hours of campath each day, then a month of anti fungal, two months of antiviral and six months of antibiotics. It completely shuts down and reboots your immune system, hoping to permanently alter it by wiping out certain lymphocytes such as cd52. I was person 28 to have it here over the last ten years. At that point, half of those who had had it for bd had found it curative. Have you been offered it?

[lizzykarma]

yes, there is a lady i know with bd through facebook, she has already had this treatment, it sent her into remission for about 6 months if not longer and she is having her second lot. unfortunately she is having to start something called the campath coelition, as they are trying to license it for other diseases, i'm still in hosp ill so unsure tbh of the technicalities, however it will make it unavailable for behcets. it is one of our most effective yet daring treatments.

you can get in touch with her here as she is looking for people to join on board the campath coelition and petition for us to remain access to this drug.

facebook.com/groups/1944276...

the uk behcets group on fb

facebook.com/Campath.Coalit...

her personal fb profile.

hope this helps.

She works alongside the addenbrooks centre as well and is absolutely lovely! dont know were i would be without her support sometimes xx

[Zebra]

That is kind. That is me! Just had my third lot. And all support for MAP - Making Awareness Permanent, Making Access Possible, Maximising Antibodies' Potential to Minimise Autoimmunity's Power would be gladly received. Through this I will be lobbying to keep Campath on the menu....and other issues. I can put you in touch with two others who, like me, had Campath. Their lives were saved by it.

[irish_mike]

en.m.wikipedia.org/wiki/Ale...

surprisingly Wikipedia has a well informed article on it and its uses, mainly MS but they do mention its used for other auto immune diseases. However I always wonder what did they do to this rat protein to make it so destructive then effective in treating our immune systems. No seriously because think about some of the other animal proteins we ingest they don't cause this so how did they discover this or alter it for our benefits. It really is quite amazing never mind the process to humanize the protein to stop our bodies rejecting it in the first place.

Good luck to anybody on it though, I wish you all the best because your the pioneers for the rest of us. My doctor won't allow me to go on any trials because my kidneys and liver etc have taken a beaten with BD over the years, he doesn't even allow some of the more common drugs because of there risks. Although I have persuaded him to allow me to try Imuran recently after a long hospital stay, he agreed but with very careful observation so hopefully that helps in some way.

If the rumours for this drugs new owner is true were they are planning to remove it from market and bring it back at the dose for the new diseases its used for with a new name, and problary at a much higher cost as well. Then we need to campaign are politicians as well to put into law something to stop big pharma from getting away with this. This will only stop people getting access to it and we already have too many postcode lottery medications out there already. I saw my doctor campaigning for some now widely used BD drugs for his patients who are nearly all arthritis patients mind you but the same problems no dobut exist for us BD sufferers up and down the land and even accross the oceans and seas etc. Time we stand up to big pharma because were all its customers and without us they don't make any profits. Yes without them then we would suffer but money is what makes them hurt after all.

One possible solution to all this would be like setting up a medical research charity. Although who owns their discoveries you wonder. Think of the millions they got but when you hear about new drugs to treat cancer you also hear there expensive and not available to everyone. If big pharma paid for the research and development itself you would expect this but didn't the research charties not have a part to play somewhere along the line you would expect. Don't we deserve a discount after all the old argument that big pharma charges a fortune so it can research other drugs isn't always true in this case. We all chipped in for the research as well did we not when we donated. So thats another law the politicians should make. If drugs were discovered with public funds in anyway whatsoever the final price should be fairer to reflect this. Anybody else agree with me or have I just ranted on again, ah well i will stop now but still best of luck to you all on and off this drug.

[Zebra]

The campaign for this has already started as it has been withdrawn except on trial and Behcet's doesn't meet the trial criteria. My non governmental not for profit group, Making Awareness Permanent (MAP) is leading the lobbying. All support welcome. Best campath site is campath.com and if you google alemtuzumab behcet you will see the facts speak for themselves.

[jzeis]

Here's a published research article that followed 18 BD patients who were given Campath:

rheumatology.oxfordjournals...