awesome results

radeck · Post by **radeck** » Thu Sep 17, 2009 2:00 pm

patientx wrote:I don't know, but, no matter what the cause of MS, no one questions that immune cells are migrating from blood vessels into the brain tissue.

Yes, but in CCSVI this could be a secondary process that's increasing the damage.

patientx wrote:So, it wouldn't be too much to assume that most of the damage will take place near the site of the migration, i.e. the blood vessels.

My point was that there's no explanation other than CCSVI that I know of for why the lesions are along veins (i.e. drainage vessels), as opposed to scattered homogeneously throughout the brain (i.e. along arteries and capillaries). If the immune system acting up would be the primary process, one would expect the latter.

patientx · Post by **patientx** » Fri Sep 18, 2009 6:18 am

Radeck:

Those are good points.

scorpion · Post by **scorpion** » Sat Sep 19, 2009 4:41 am

Aaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. i CAN'T GET AWAY FROM CCSVI INFORMATION!!!!!!!

bromley · Post by **bromley** » Sat Sep 19, 2009 6:11 am

Scorpion,

I agree - it would be good to keep this focused on Campath.

patientx · Post by **patientx** » Sat Sep 19, 2009 9:23 am

Lyon wrote:I do remember raven/Robin mentioning a research paper derived from Campath stats (1 1/2 years ago??) and their conclusion at that time (if I remember correctly) was that people with MS, in general, have incomplete or faulty homeostatic expansion, because after Campath ablation, certain T cells still hadn't returned to normal numbers, long after they should have.

At this point I'm not sure how to look that paper up because I've forgotten the names of the researchers...maybe search "campath homeostatic" in pubmed??
Bob

Maybe this is the paper:
"Lymphocyte homeostasis following therapeutic lymphocyte depletion in multiple sclerosis"
http://www.ncbi.nlm.nih.gov/pubmed/16231285

In searching for this paper, I came across this phrase describing the mechanism of action for Camapth:

"This drug causes long lasting T lymphopenia..."

I had read this before, but didn't give it too much thought. Is this implying the mechanism for Campath is long-term immunosupression, rather than a form of "re-booting?"

Lyon · Post by **Lyon** » Sat Sep 19, 2009 11:47 am

raven · Post by **raven** » Sat Sep 19, 2009 12:54 pm

Remember that I am not a neurologist or researcher so nothing I say should be construed as medical fact however in regard to the paper that has been mentioned I did discuss this with Alasdair Coles. The failure in homeostatis refers to the phenotypes of the T cells i.e the balance betwewen TH1 and TH2 types is affected after Campath treatment. As TH2 are regulatory T cells I construed this to be a beneficial thing.

Treatment does not result in long term immuno-suppression. My WBC count is normal and has been since about 6 months after my last treatment. The incidence of colds, infections et al has not changed as a result of treatment ( at least in my case )

I can't comment upon the CCSVI issue, I know nothing about it. I have never read any papers that suggest lesions happen near veins rather than arteries but just because I'm not aware of it doesn't mean it isn't true.

I do know that I am still relapse free. Whilst to someone reading this, that is anecdotal, to me it is fact.

Isn't a zamboni something you smooth your ice rink with???

Robin

Lyon · Post by **Lyon** » Sat Sep 19, 2009 2:52 pm

patientx · Post by **patientx** » Sun Sep 20, 2009 8:44 am

Bob: Thanks for the article.

Robin: Though it seems common sense, did Dr. Coles agree with your assessment that increasing the percentage of TH2 type T-cells over TH1 cells is primarily a beneficial thing? I wonder this sometimes, since it seems that messing with the natural balance of the body (even in ways that on the surface appear entirely beneficial), may not always be a good thing. (Although I don't have a specific example in mind).

raven · Post by **raven** » Sun Sep 20, 2009 10:18 am

To be honest the conversation was a long time ago. I do remember enquiring specifically about the article and coming away being reassured by the answer howver reading the later article posted by Lyon also written by Dr Coles it seems that the situation is a lot more complex than a shift in the TH1/TH2 balance.

I agree that shifting the balance of your biological systems is not something to be taken lightly however I take the view that if my body was in balance in the first place my body would not have started attacking itself.

Robin

patientx · Post by **patientx** » Mon Sep 21, 2009 6:26 am

Good point, Robin.

I do have another question for you, if you don't mind. If you haven't already passed it, I believe you are coming up on the 3rd year since your last infusion. What is the monitoring plan from there? I think the trial protocol called for 3 years of monthly blood checks. Will they continue with a less frequent schedule? And will you follow up with the trial coordinators, or just your own neurologist, for things like MRI, exams, etc?

Also, what would trigger a further infusion treatment? Would it be simply another relapse?

Thanks.

raven · Post by **raven** » Mon Sep 21, 2009 12:37 pm

The blood tests are 3 monthly after the first year. In the normal course of events I will be monitored for as long as I wish and should a relapse occur then I will be re-treated, however there would be prescription hoops to jump through. I have been offered the chance to take part in an extension study (which I have accepted) under this I get yearly MRI scans to monitor any disease activity and should activity be found or a relapse occur I will automatically be given the option of re-treatment.

Robin

Lyon · Post by **Lyon** » Tue Sep 22, 2009 1:59 pm

Tiffany · Post by **Tiffany** » Wed Sep 23, 2009 4:51 am

Hi Lyon,

Lyon wrote

it also seems that, for some reason, the researchers want to push the name Alemtuzumab rather than Campath 1h

I'm sure that there are many technical reasons for that but I believe the most honest reason is that researcher's have a wicked sense of humour and know that most people do not have the athletic tongue required to actually say Alemtuzumab out loud

Can't really comment on Campath as my views are very biased but hope your keeping well.

Jules (Robins other half)