Anyone got any advice?
Tips for staying in hospital, coming home etc.
Any help very welcome.
Anyone got any advice?
Best of wishes to you - lucky person. This is a brilliant drug and can stop MS dead. No more activity - ever, if it works as it should.
There may be no one here who’s had it, but I know a couple of people who post at thisisms.com - it’s worth going and looking at the forum there.
Please let us know how you get on? Many people would be very interested to read what happens.
I didn’t know it was difficult to get it!
I have RRMS and I know it’s no good for any other type.
I shall have a look at their post on campath.
Many thanks x
Oooooo, that’s really exciting!!! Sorry, I can’t offer any advice, but please let us know how it all goes? (Well, I hope!)
I have had 3 lots of Campath, with the most recent in January. Send me a personal message if you have any specific questions.
The main advice I have is ask for something to help you sleep if you are staying in hospital, as they will probably give you steroids to help with the side effects. I’ve had Zopiclone at night which knocks me out for a few hours. Drink lots of water as this will help to keep headaches to a minimum.
When you get home be careful about what you eat for 3 months, you don’t want food poisoning with no lymphocytes to fight it. You might get given a list of foods to avoid. You’ll probably get tired very easily for a few weeks afterwards.
Good Luck and feel free drop me a line in the coming weeks if you want to ask anything
Thanks for posting and let us know how your get on!
I love this site. I did not know about this until you posted!!
It sounds really exciting and the very very best of luck!
I had my first infusion on December and havent looked back. I new person is all I can say.
The infusion for me went in very slowly each day becasue I had had a bad reaction to tysabri so they decided to take it very slow. 10 hours in total. You'll get an antihistamine injection, then an hours steriods and for me, the campath over 9 hours. It was boring but becasue it went in so slowly I didnt get much of a reaction.
You have to eat freshly cook foods for 3 months after becasue your immune system is re-booted. For me, about 2 months after the treament, I went from sleeping 12 hours a night to having to forse myself to sleep after midnight and work fresh as a daisy 7 hours later. Havent looked back.
In ireland they test your blood every month, i assume its the same in the UK to make sure there hasnt been a drop in the platelets of your blood, thyroid problems etc.
Alasdair Coles in Cambridge is recruiting for a new trial using Campath. It's called the CAM-THY trial- and it's trying to see if they can give an additional drug that prevents the side effect that effects the thyroid. Everyone on the trial gets campath. I'm not good at putting in links, but if you google it, it's there.