This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey............when I quit laughing, I may be able to talk again.

Yep, your grey matter is just fine!!!!

Robin,



Sounds scary....doesn't it



Yes, it will be a battle between Biogen/Elan and the lawyers but if you read Deb's many messages on Tysabri, she TOLD Biogen ages ago about the dangers of Tysabri. If Deb knew, then Biogen/Elan must have known....the BIG question is...what did they tell the trial participants before they volunteered themselves for these trials?

Take care.

Harry

Maybe we should ask Anita Smith? No, wait, we can't! (I think maybe the end result there is self-explanatory. ?)

In any event, it'll be interesting to see what Biogen has to say for itself, OUTSIDE of all their press releases.

And remember, that poor woman didn't have MS in the first place. That's going to be REAL interesting. I'm hoping this case gets all the way to a court trial.

Deb

OddDuck,
Hope everyone is doing well or at least improving. I check ThisIsMS once in a long while to see what topics are being discussed but, since I don't know anything about the drugs that are discussed, I can't really contribute.
Things are going well for me. I sent my theory to NMSS earlier this year but I never got any response back, even though I tried to follow up with emails. I didn't expect much anyway. The theory (polyamines and autoimmune diseases) is still valid as far as I can tell but so are a lot of others. I didn't get a grant to support testing the ideas relative to cancer but, since only 15% of grants get funded nowadays, we weren't really expecting to get funded. That actually worked out well for me though. Even though I didn't get the funding to do it, I went ahead and did some of the proposal by creating a homology model of one of the enzymes and did virtual screening on it and am sending the model and the list of potential small molecule inhibitors to one of our collaborators to test experimentally since they have the purified enzyme. He is very interested. I think everyone is realizing that more than one enzyme in polyamine synthesis has to be targeted in a round of therapy to be effective and reduce the side effects. So this will give us another enzyme to target. Could be useful in cancer and autoimmune diseases if we find something.
Also, I got promoted to a position where I will be doing high throughput screening as well as the virtual screening. So I can run computer based screening on an enzyme, find potential drug candidates, and then run the actual experiments myself using robotics. I have a lot of learning to do though for this new position, so the robots don't turn on me!
Finally, I had an idea for a new project which immediately got internal funding at my institution. I can't go into it but hopefully we will have something published soon and we can get some full blown funding from NIH or other funding source. This could be big. I would be really excited about it if I wasn't so busy on so many different projects.
Anyway, it's good to see you are back at it on ThisIsMS with all your keen research abilities. Wesley

Hi, Wesley!!

Wow! Congratulations! Sounds like things have been going great for you lately! That's terrific!

Oh, and thank you for the compliment about my research abilities. Coming from an expert like you, that is extremely flattering! I appreciate it!

Things have been going really well for me, also. Especially at work. As you say, it sure keeps me busy, though!

Deb

Hey Guys n Grrls,

Haven't posted in a while because I'm doing really well and have gone back to work where they monitor internet use carefully... and hence...

Anyhoo --- I've been contacted this week, to get on the phase II trial with daclizumab. They said, I should stay on Rebif while doing this. I really haven't heard/read how anyone is doing and would rather read it here than it some materials from the biotech company (or the MS Society for that matter).

This trial will be at a teaching/research hospital (Wake Forest University Medical Center) and there appear to be many checkups where they are checking blood, urine and MRI as well as routine physicals and standard Neurologic exams.

Last time I was down with MS (I don't have fibromyalgia) I wold have been kicking myself - if I could stand up to kick... Because they told me I was unlikely to walk again (WRONG)...I was on Avonex and hadn't gone to the 'stronger' Rebif or Beta...

I really don't want to end up back in a wheelchair knowing I had one more bullet left (this daclizumab)... but I don't wanna shoot myself in the foot/head either...

Thanks for muddying the waters Deb (seriously - what esle would you expect from an OddDuck?) I also need to look at it in this way as well.....you always give a good perspective on stuff.

Here's an example:

In the materials they gave me they do have plenty of disclaimers - but it's a little watered down compared to what Deb states. "In a single study in patients who had undergone heart transplantation, the death rate in patients treated with daclizumab was slightly higher than in the death rate in patients treated with placebo" They don't mention why - as you did - But they also state (and you don't) "Additionally, all pateints were taking daclizumab and other medications to supress their immune system."

Last night I was about 66% sure I'm gonna do this -- now I'm back closer to 50% -- I don't think it's a good idea to try anything new without checking here first... Save a bunch of red tape I would have been on Tysabri also... paperwork had already been signed eeeek!

Hugz n Blessed Be )O(
=Greg= aka Will Robinson

_________________
I'm learning to breathe under water. It's quite beautiful down here.

I used to think that if I tried, I would drown.

Greg,



I guess one question I would ask them is whether other patients in the Daclizumab trial, at your location or elsewhere, will remain on Rebif or any other interferon that they may be taking. If the answer is yes then ask them if this is part of a combined therapy trial protocol.

Past experience has taught us that there were concerns about Tysabri patients who were taking Avonex at the same time. Daclizumab is a monoclonal antibody which is part of the same class of drugs as is Tysabri. If you continue to take Rebif during your trial, then how are they supposed to know if it's the Rebif or Daclizumab (if you aren't on placebo) that is affecting what is happening with your MS?

A friend of ours is in the Daclizumab trial. She had been on Avonex for a number of years and the neuro told her that the Avonex wasn't doing anything for her any longer. She was advised to stop taking it and then offered the Daclizumab trial. My wife will be talking to her today and asking about how she is doing.

Harry

It is the first genetically engineered drug to reduce the risk of organ rejection in kidney transplant patients without increasing overall side effects. There are lots of principal side effects in zenapax:) hypertension and coughing, but if you follow the dose, and you dont miss it, the adverse reactions will reduce.