This Is MS Multiple Sclerosis Community: Knowledge & Support

Attached is a presentation by Dr Alasdair Coles (the Dr overseeing the Campath trials - of which I am a participant). He discusses both Tysabri and Campath and the risks / potential benefits.

Ian

http://www.mssociety.org.uk/a_chance_to ... mpath.html

Harry Z - best if you avoided this one as it's about monoclonal anti-bodies!

Thanks Ian.

I'd been trying to learn more about Campath-1h and that was a good lesson.

Interesting situation. A stranger situation than I had envisioned.

Even though he didn't offer an explanation I'm glad Dr Coles mentioned the Thyroid situation and that he also found it perplexing. Also something odd about the fact that Campath-1h kills the lymphocytes but doesn't leave the patient without an immune system. Either the immune system isn't exactly what we think it is, despite other information supporting that it is what we think it is, or Campath is only killing lymphocytes selectively.

Either way, lessons are to be learned from the Campath studies.

Bob

Tysabri is being kept out of Scotland and possibly England because if its huge cost vs potential benefit. Yet, prior to the drug's original approval, Biogen/Elan touted the fact that it would only take about 18 months of the expected patients' use to break even. Just prior to the re-release of the drug, Biogen/Elan raised the price by about 22%. Wouldn't you think that Biogen/Elan, if they were truly interested in the benefit of MS patients world wide, would set the drug's cost at a level that would encourage country health organizations to approve its use? That would have far more patients using the drug for many years, thus ensuring a huge, steady revenue.

Then again, maybe Biogen/Elan know something about Tysabri that has prevented them from following this logical route.

I also found the European Health Organization's suggestion interesting for how Tysabri should be used....one, if patients didn't respond favourably to the CRAB drugs....a good idea...and two, if the MS patient had a severe and fast advancing form of the disease.... Tysabri has not been tested on this type of patient and has not been recommended for this kind of MS.

As for Campath....being a monoclonal antibody there could be more surprises that they discover beyond the problems the docs already have encountered. Time will tell but it's good to see that the researchers are taking a far more cautious approach.

One part of the presentation I found interesting....it referred to Campath possibly stopping the entire MS immune system mechanism for a very long time and thus halting the disease. Hmmm, I didn't realize that MS's mechanism was totally immune system driven and that was the entire answer to fighting the disease!!

Harry

My personal view is that with oral treatments with less risk and the same effectiveness on the horizon, and other tretments with much better effectiveness, they realise their long term money venture is limited, and a quick buck is all they might hope for.

And hence the word possibly. Have yet to watch the presentation as yet.

I finally got to see all the vids. I found it VERY interesting that they found people would develop a new Auto-Immune coondition when they appeared to remove MS (with Cammmpath-1h). Although they took it seriously, they seemed fixed on reducing the risk/effects from developing them, and not so much as to WHY? Do non MS people who get Campath-1h increase their risk for an AA disease?

I had never previously knew of the risks associated with Campath-1h for a new AA.

You start to wonder if the patient's MS has been removed or temporarily put on the back burner. These monoclonal antibody drugs are powerful and unpredictable as to what they may do. Dr. Lawrence Steinman(co-inventor of Tysabri) wasn't kidding when he commented that this class of medication has to be treated with a great deal of caution.

Could we end up with medications that perhaps fix one thing and cause many others to surface that may subject the patient to much higher risks?

Harry

Cure, to answer your question about non-MS sufferers who take campath, I found a posting in Pubmed that suggests thyroid concerns apply to other patients taking campath.


Autoimmune thyroid disease after renal transplantation using depletional induction with alemtuzumab.
Am J Transplant. 2006 May;6(5 Pt 1):1084-5.
Kirk AD, Hale DA, Swanson SJ, Mannon RB.

I found the vids v informative. The improvements seen in the ms trial of Campath were significant. However, there are, as Dr Coles acknowledges, questions arising from the findings eg the thyroid issue as well as risks of the alternative auto immune disorder and uncertainty about the long term effects of Campath. In my mind none of these as anyway near as scary as the 1/1000 risk of PML if taking Tysabri. Sadly time is not on our side when we suffer from ms esp with something like Campath that appears to work most efficiently when given early on. I can understand why people would be willing to take the risks associated with Campath and until we know more I think it's an issue of informed consent with the info we have now - assuming NICE decide to licence it here in the UK.
muu

14 years ago at HQ of one huge pharmaceutical company in Europe I was asked what do I think about monoclonal antibodies agaist MS. My answer was - it will not work properly. This was totally unexpected, "Jees, we just bought the company", and we changed the topic.

Well, now we got patients treated with 2 kinds of MNA. Either one reduce the rate of relapses (as other "autoimmunity" drugs do), numbers vary, official site of Tysabry says - one third, other sources - up to two thirds. Disability increased at the same rate as untreated.
I can expect that in a long run the disability would be even greater after MNA use because of more intensive scarification of lesions. I post somewhere here the timeline of axonal death -8-10 years, so this must be evaluated in a longer period trial, say at least 5-6 years.

If you remove the part of natural immune response from the brain, you alter the natural course of healing. Everyone with MS have heard about "miraculous" cases, when people with MS recover after being severely disabled for a long time. We a talking about axonal surviving here.

Anyway, when we talk about treatment options it is your choice. I am not against drugs, I stand for their PROPER use.
And there is always hope

Kind regards,
Tony

TonyJegs,

What do you consider "Proper" use for these MNA drugs? I am not being confrontational here, just curious.

gwa

Well, there is up to 2 percent of MS with rapid progress and brain detioration, very aggresive indeed. This group is the perfect target, this kind of drug can slower it down remarkably.
In usual R-R MS cases I affraid that increase of disabilty will eliminate the benefit of having less by third rate of relapses.

Kind regards,
Tony

Note. All my posts are not a medical advice and reflects an independent opinion only which could contradict with current manistream theories and current guidelines of treatment in your country.

Hi Tony,



The unfortunate part of that good idea is that the drug companies wouldn't be interested in testing and promoting it for that kind of use.....not enough patients in the category which translates into far too little revenue.



Sounds like some of your opinions are the same as mine. Most of the readers here know that I have little use for the current mainstream theories of MS treatment. I watched it closely for more than 40 years and am far from impressed at the progress that has been made.

Harry