Has anyone tried Campath?

[kezzle]

Hi,

I'm trialling Campath at the moment to try to put me in remission with my Bechets. At the moment I feel so poorly and I'm worried about going in for my second round as my first didn't work due to an infection. I'm scared but trying to be positive that this time round will be the right treatment and work!

So I was wondering if anyone else has tried Campath and if it worked for you and what side effects you had during and after treatment.

Thanks Kezzle 😟

[Hidden]

Hi Kezzle,

There are a few people on the Vasculitis UK closed Facebook group who have had Campath for Behcets.

Are you being treated at Addenbrookes, as far as I am aware they are the only centre that has access to it for a Behcets.

[kezzle in reply to Hidden]

Thank you for your reply how do I become a member of the Facebook group?

[Hidden in reply to kezzle]

The link to the Facebook page is on this link.

vasculitis.org.uk/about/onl...

Click on it and send a joining request ( you need to be a member of Facebook as well ) and I will add you as I am one of the admins on the site.

Best wishes

Lynn

[kezzle in reply to Hidden]

Thank you

[lotbags]

Hi Kezzle! I've just had my second round of campath and was really worried about having it done because the first lot made me so poorly. The first dose totally wiped me out for months and I haven't been able to work (I'm a teacher) - was having fevers, weakness, weird skin reactions and my white blood cells refused to come back! Plus, my Behçet's symptoms started creeping in again after a couple of months 😩 BUT I decided to give the second round a go and so far so good (I think!) I had it done a couple of weeks ago and although I'm still wiped out and headachey it feels a little different this time! Behçet's seems to be at bay for now 🤞 I'm crossing my fingers! Lottie x

[kezzle in reply to lotbags]

Hi Lottie,

Thank you so much for your reply, it was honestly like I had written it myself. I'm a teacher too and all my symptoms were the same as yours I'm feeling so poorly at the moment with a bad flare up. I am due to have Campath next week but my white blood cells still haven't come back yet.... So I'm waiting....

My fingers and toes are crossed for you (and me). I just want to feel well!

Kezzle x

[lotbags in reply to kezzle]

Oh my goodness, I'm sorry you're going through a rough time but it's good to know that I'm not the only one in this sickly boat! Weird how similar our experiences are too! Is Pani at Addenbrookes looking after you too?

In the end my white blood cells *just* made it over the threshold. Fingers crossed yours will too! Hopefully we'll both have better experiences with the second round 🤞

Lottie xx

[kezzle]

Hi Lottie,

How are you feeling? I'm sitting in the chair now having campath fingers crossed! Are you on WhatsApp? Would be good to be able to chat if you don't mind?

Thanks xx

[Carty3]

I know this is off topic but can anyone tell me if epstein barr virus can be an underlying route or cause of BD. I guess this may be a stupid question idk. My apologies if it is.

[Zebra]

Hi Lottie and Kessle, another teacher here. Had three courses. Second and Third gave me back my teaching career and been 4.5 years without treatment. Just been Acting Head. About to most likely have 4th course. How's it going for you both health/school wise?