This Is MS Multiple Sclerosis Community: Knowledge & Support

Alli,

I think your best bet is try to to enter one of the Campath trials. Two Phase 3 trials are currently in process and recruiting: The CARE MS 1 study, for people who haven't been on any medication yet, and the CARE MS 2 study, for people who have relapsed while on one of the DMDs. I would think you would have an easier time finding a trial than getting the Campath off-label. Also, they monitor you very closely in the study.

If you want to PM me, I can give some more info, including site that might be near you.

Alli,
I tried to PM you this weekend but for some reason the message was still in my Outbox when I checked this afternoon. If you would like information on my doctor just PM me.

Well I started a great discussion.
Interferon treatments were not working for me and my MS was progressing, that is why my Doctor recommended Campath. It did not work for me, however trial results have shown that it is 84% more effective than Rebif in those with RRMS. (not as effective for SPMS). I thought that this was the answer for me. Unfortunately it was not.

To answer your concerns about the brain infection and Graves disease...I have to have my blood work performed monthly. If a problem was found, it would be easily treated. I have been fine.

My problems have been the onset of severe allergic reactions. Yes, I did have athma prior to Campath, but it was controlled. I did not have severe allergies. Just keep this in mind and ask your Doctor about his outcomes using the drug and if he/she has had patients come down with severe allergies after Campath.
Good Luck

_________________
A fighter of MS

Hi Ursula,

actually we do not care much about the shares of Bayer but we do like to hear about and discuss the results of the trial.
The data that was published now, as bromley stated, come from the 3 years (final) results of the phase-II trial. While the data previously know where preliminary 2 years data of an ongoing trial.

--Frank

p.s.:
Wenn du nur Lust hast blind auf Pharma-Firmen und deren Profitgier rumzuhacken, dann empfehle ich dir das DMSG Forum, da wirst du viele Leute treffen die auf deinem Niveau sind.

_________________
Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

I know you posted info on how to find the hospital that did it for you, but I failed to find them 100%. Could you please post something a little less cryptic or PM me please?

If I can be so bold, do you know how much they charge? and if so, was this the price to the medical insurance company or to individuals? I have seen the price for HyCy, and was interested to see how this treatment compares; as well as see what it may cost me if I decide this route.

Yep I agree with you and tried. But I fall between the cracks on these two studies, so off-label appears to be my only path at this time.

Cure:

My post was probably too presumptuous. I should have realized this considering I, myself, couldn't get into a trial. And, the other thing I thought after I posted, is that in the trials there is still a 25% chance you will get Rebif. But, I haven't heard of any doctors (at least in the U.S.) prescribing Campath for MS.

Hi Frank,

just one question: Who is "we"?

P.S.: Ich dachte eigentlich, dass das Niveau hier hoeher ist als bei der DMSG - aber wenn ich Deine Antwort so lese...

_________________
ursula

There is a Neurologist in TN and one in TX prescribing Campath. I received Campath off Label in TN.

_________________
A fighter of MS

'We' appears to be everybody except you right now.

Ursula's cool. She's in the EGCG study in Berlin and is doing well. She's dubious about big pharma (like others on the board )
And she's not alone....we just usually keep to ourselves and hang out in the natural/regimen threads.

I say, whatever works!
Peace/out,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Fair enough, apologies.

Hi Cheerleeder,

you are right.
I really do appreciate independent research.
The EGCG trial is financed exlusively by public money.
I´d say you can trust a university like the "Charite" a little bit more than any of the Pharmas...
Their aim in the first place is to cure MS one day, not the share price.

_________________
ursula

Hi Ursula,
Are you familiar with a Dr "Sommers" or "Summers" at either Marburg or Charite? I'm not sure whether or not he/she is a neurologist but I do know that he/she is a medical researcher who, at this point, has a two or three year experiment/clinical trial using T suis (swine whipworm parasite eggs) against MS and the language barrier (and probably intentional secrecy) has been a real problem in keeping me from finding info about results to date.

Bob

Hi Bob,

very interesting approach..!
I´m sorry but I`ve never heard of german trials on that.
I only heard of the one of argentina (which you probably know already) and an other one (but not in germany):

http://abcnews.go.com/Health/PainManage ... 748&page=1

Also interesting, but no news about that:
I think in 2006 italian researchers injected modified tuberculosis bacteria with good results.
Maybe there was (once again) not enough money to go on with the studies..
The idea is similar anyway..
Do you know this one?

_________________
ursula

Hi Bob,

in the meantime I found something about Dr. Summers (but nothing new)

http://www.ovamed.org/english/home/home.html

http://www.autoimmun.org/archiv.php?tit ... S-Therapie

It says: The trial "will start in 2005" at the Charite - maybe it never started? Or there was not enough money? I could ask at my next appointment.

_________________
ursula