Campath results at ECTRIMS

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Postby Lyon » Fri Oct 26, 2007 6:13 am

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Postby CureOrBust » Fri Oct 26, 2007 4:29 pm

Lyon wrote:...when your disability was so minimal.
big call, where did you source that chestnut from?
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Postby raven » Fri Oct 26, 2007 4:43 pm

I was EDDSS 4.5 prior to treatment. We all know the EDSS scale is far from perfect but the disability sure didnt feel that minimal.

I'll be re-tested on the 6th Nov but If the score is greater than 2.5 I'll be really surprised.

I do know that I get one point for having visible scarring on the retina of one eye despite the fact that my eyesight is better than 20-20. (or at least it was the last time I was tested)

To be honest though the physical disability is a lesser component of the disease compared to the psychological horror that it inflicts. On the psych scale I've gone from OMG my life is over to NEXT......

(or even OMG I'm married my life is over.... )

:)

Robin
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Postby Lyon » Fri Oct 26, 2007 6:32 pm

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Postby raven » Sun Oct 28, 2007 4:35 pm

Hi Bob

Don't worry no offense was taken :), I just felt it important to highlight that my disability while by no means as severe as some, was not what I would call minimal; not because I feel that I need some kind of medal but purely to give a true picture of my experience with Campath.

It strikes me as I read this board for the first time in a few months that there is an inherent anti-establishment bias. I have no financial interest in Campath or any other MS medication but it does make me wonder why the Campath section of this board has so few posts / so little interest compared to other far more speculative approaches.

I wasn't in a wheelchair, I didn't leap out of said wheelchair within 10 minutes of treatment, however, I have seen a complete sessation of relapses and a marked improvement of function since treatment. Not over a period of a few days or weeks but for 2 years now. In my book that is a real and important advance in the the treatment of MS. If I were an isolated case then that could be explained as a spontaneous remission but everyone who I meet who has been treated with Campath has had the same results.

I realise that Campath isn't for everyone, as is becoming clear MS has distinct phases and once a point is passed then the chances of it working are lost, however for early or mid-stage RRMS I have not seen anything that even comes close to it. I can however list many many treatments that cause much more interest that haven't anything like the track record that it is quietly producing.

What does stick in my memory when I went public with my decision to participate in the trial was the amount of PM's I received counselling me against the treatment. Prineas and Barnett were quoted ad nauseum, MS isn't auto-immune, researchers have it wrong, etc. etc. If I had listened I have no doubt that I would be in a far worse situation than I am now.

Campath is not available to MS sufferers except under clinical trial conditions. I hope that one day soon that situation will change so that all patients will at least be given the option of an informed choice. Until then I can only quote Douglas Adams and say 'So long and thanks for all the fish'

Robin
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Postby Lyon » Sun Oct 28, 2007 6:06 pm

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Postby CureOrBust » Sun Oct 28, 2007 6:15 pm

Robyn wrote:I was EDDSS 4.5 prior to treatment. We all know the EDSS scale is far from perfect but the disability sure didnt feel that minimal.


Robyn wrote:I realise that Campath isn't for everyone, as is becoming clear MS has distinct phases and once a point is passed then the chances of it working are lost, however for early or mid-stage RRMS I have not seen anything that even comes close to it


Robyn, how long were you at 4.5 for? I have an interest in campath, but worry that the repair process wont be so great if the damage has been around too long.
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Postby Shayk » Sun Oct 28, 2007 6:46 pm

Hi Robin

I really appreciate your "checking in" to update us and think it's wonderful that Campath has served you (and others) so well. Great news! Congratulations on your marriage as well.

I think the lack of posts and interest in Campath may in part be a function of the fact that the clinical trials to date have not been broadly accessible. Based on what I've read so far my impression is similar to yours--that for early or mid stage RRMS the results seem to be excellent.

I hope you'll continue to let us know periodically how you're doing.

All the best

Sharon
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Postby bromley » Mon Oct 29, 2007 10:25 am

Professor Compston presented the Phase II 3 year results on the last day of the ECTRIMS conference and gave the Charcot lecture. A summary of the lecture is attached. There has been much discussion on this site about the interplay between inflammation and neurodegeneration. Prof Compston's lecture presents his view based on the experience of using Campath on different cohorts of MS patients (initially used on SP MS patients then on RRMS patients). Campath kills T and B cells which might explain why the results, so far, have been so promising.

http://registration.akm.ch/einsicht.php ... KEN_ID=900

A possible reason why some RRMS patients have seen some improvement in disability is given on the Cambridge Neurosciences website:

Surprisingly, the disability of MS patients treated using Campath-1H improves after treatment, perhaps because of production of neurotrophins by lymphocytes regenerated after Campath-1H.


Campath would appear to be the most effective current treatment (with some risks) for the inflammatory phase of MS. Hopefully, in the future neuro-protective agents can be added (as an insurance policy) to treatments that address the inflammation. But at the moment, I'm more than happy that I haven't had a sniff of a relapse (compared to three between Jan and October 2006) since my infusion at the start of last December and have seen good improvements (verified by the blinded neuro who does my EDSS assessment). As with Robin, I hope that the Phase III trials replicate the results seen in Phase II so that others, if they choose so, can benefit.

Ian
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Postby Lyon » Mon Oct 29, 2007 1:24 pm

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Postby CureOrBust » Tue Oct 30, 2007 1:14 am

Lyon wrote:... what use would neuroprotection be and wouldn't adding it (if "it" existed) just be unnecessarily complicating things?
Ian can correct me, but I think he was speaking of "neuroprotection" in the guise of repair; that's certainly my big personal interest in Campath.

... the disability of MS patients treated using Campath-1H improves after treatment, perhaps because of production of neurotrophins by lymphocytes regenerated after Campath-1H.
I would guess that neurotrophins are seen beneficial as "neuroprotection"
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Postby Lyon » Tue Oct 30, 2007 6:37 am

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Postby raven » Tue Oct 30, 2007 10:36 am

Bob,

I think the body does get the credit but in a roundabout sort of way. In it's attempt to reconstitute the lymphocyte population the body produces neurotrophins which as a happy side effect also promote the regeneration of neurons.

That is of course speculation on the part of the researchers which they are attempting to verify. I know from talking to one of the PHD graduates involved in the trial that they are looking very closely at this aspect.

I was told that serum from my blood caused rat neurons to grow whereas serum from untreated healthy controls did not. Therefore treatment with Campath creates a condition that promotes regrowth that does not exist in controls.

We cannot credit Campath in any way for neuroprotection or regeneration, it is a purely destructive mechanism. We can however credit the body for in it's attempt to repair the lymphopenia caused by the treatment also repairing the damage inflicted by MS.

Robin
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Postby Lyon » Tue Oct 30, 2007 12:07 pm

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Postby Brainteaser » Fri Nov 02, 2007 9:41 pm

I think it is fantastic that Robin, Ian and others are doing the Campath trial and reporting back such favourable results. Undergoing such a trial is certainly breaking new ground which presumes a significant level of courage on the part of the participants.

Robin mentioned earlier (about a year ago) that he was having the Campath treatment in Bristol, presumably under Prof. Neil Scolding. He also said that the plan was for Campath to stop the relapses and inflammation and then for a stem cell treatment to remyelinate.

At the same time there have been recent reports of Prof. Scolding undertaking a bone-marrow stem cell trial. So my query is whether the two trials are linked?

Robin, without prejudicing your involvement in the study, are you also having SCT? Or is it that the neuroprotection and improved function you are experiencing, obtained purely from Campath, alone? Or, my guess would be that at this stage the two trials are purposely separate but in due course SCT would be given to Campath patients?

Thanks,
Phil
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