camapth trials in Australia?

elaine · Post by **elaine** » Wed Oct 18, 2006 4:54 pm

hello everyone i was on betaferon but developed anti bodies so was asked to go on a trial to try and "flip" the antibodies my antibodies did not "flip" so my neuroligist put me on capaxone have been on it for nearly 12 months and every four weeks or so i keep getting immediate post injection reaction with dizziness,heart palpitations and difficulty breathing.I am just so over this whole MS thing!!!!! doesnt it know that i have 3 young kids i have to take care of.Anyway does anyone know if they are campath trials in Australia as my neuro just keeps telling me to stick with the capaxone and when i have a reaction "just ride it out"
thank you for letting me vent Elaine

Melody · Post by **Melody** » Wed Oct 18, 2006 6:00 pm

John has had several of those reactions but we are always told it rarely happens. They scare the hell out of me at the time. We figured recently that I think it happens when he injects into areas that don't have enough fat and to much muscle. Since John's MS has all but gone away his muscle tone is back to pretty much before MS( alittle lost mainly due to he is 43 not 30). For back ground John was a martial arts instructor as well as a roofing contractor. We still deal with roofs but I try to keep him off them when possible. He is doing construction so as I've said his muscle's are in great shape. Is there a chance you are injecting into something other than fat? Since we are more careful he hasn't had it happen again.

elaine · Post by **elaine** » Wed Oct 18, 2006 7:15 pm

hi melodey
thank you for your response but i don't think for me its got to do with fat, even though i am fairly thin i still have a bit of fat on my tummy after three kids so even injecting there i get reactions.
But i am glad to hear that John hasn't had any more reactions, my doctor said they don't do any damage but i still get a bit worried
elaine

CureOrBust · Post by **CureOrBust** » Thu Oct 19, 2006 3:02 am

I just recently spoke to my nero, he is involved with the trial of tysabri here in sydney. I asked about campath, and he did know of any trial here in australia; however, he didn't seem that interested in it, so I wouldn't discount it. I also did a search on http://www.clinicaltrials.gov/ct/search looking for campath and austrlia, and only found something for cancer.

elaine · Post by **elaine** » Thu Oct 19, 2006 3:18 am

thanks cureorbust i am in Melbourne and my neuro is not interested in discussing campath with me at all.
Thanks for your reply Elaine

CureOrBust · Post by **CureOrBust** » Sun Aug 03, 2008 7:22 pm

elaine, I saw my neuro again, and it now seems he maybe running with a campath trial. See my post at http://www.thisisms.com/ftopicp-43914.html#43914 for contact info for him. He is based in Sydney, but may alsno know a contact in Melbourne.

CureOrBust · Post by **CureOrBust** » Fri Aug 08, 2008 4:00 am

I spoke to the research assistant of my neuro today, and she told me they are snowed under with FTY720, BG12 and Tysabri (both treatment and the trial extensions), so they won't be starting Campath for a while, but she will ring me back with a contact for Westmead Hospital (just outside of Sydney), who are also running a Campath trial.

CureOrBust · Post by **CureOrBust** » Tue Aug 19, 2008 5:16 am

Today the research nurse called back, and left a message.

From what I could gather, they have already enrolled for their first Phase III which involves "treatment naive" subjects. I have not even seen this one published as being started, and they have finished enrolment?

She then said that they are going to soon be starting a second trial (in about a month) with Campath. She said the exclusion/inclusion criteria is pretty strict.

CureOrBust · Post by **CureOrBust** » Wed Aug 20, 2008 2:28 am

I spoke with the research nurse at Westmead today. She indicated she was heavily involved with the Campath trials in NSW. She also told me that they have two trials; one is recruiting, and the other will start in about a month.

The one she is currently recruiting for, is for patients who have not undergone any standard treatment (i.e. CRABS). I asked her if she wanted me to pass out her number, and she said yes. She has concerns about enrolling for the first trial.

Sydney: Therese Burke, Westmead Hospital (02) 98457 7997

I think the following two are the trials she is running with, but it would be best to call her and talk. I found you will never catch her during the day, but in the morning, she is on her phone (so I kept ringing till I got through); she did return my call from a message I left on her answering machine anyway.
CARE-MS I
CARE-MS II

I am out of the first one because I have had rebif treatment, and I may be out of the second one, as I realised it "wasn't working for me" in less than six months, and stopped. Also, although my diagnosis was in 2005, my first symptoms were around 1995 (ie Over ten years). She is ringing Genzyme (USA) to see if I can qualify. So, I may be out!

CureOrBust · Post by **CureOrBust** » Fri Sep 05, 2008 7:04 am

Yep, I'm out. Genzyme appear to be firm on the 6 months on one of the CRABS (I was only on it for four).