This Is MS Multiple Sclerosis Knowledge & Support Community

Curious if anyone knows the details of why JH is no longer accepting patients. To many requests? Study is complete? Etc., etc., etc.? The Rush program is geared a bit differently and I have family close to Baltimore.
Thanks,
Lars

Hi Lars,
I believe they are no longer doing open label HiCy. They will be beginning the blinded phase 3 trial in the winter. They may not be accepting because they have enough participants. Chris seems to know a bit more about this. You may want to contact him on his site.
Sandy

I called JH, and the woman told me they are booked with patients receiving the off-label HiCy for the near future. They will be starting a phase III trial sometime in the beginning of 09. From what I gathered, they cannot accept off-label patients while the phase III is going on. Hence, they had to stop accepting patients. You can start submitting your name for the upcoming trial.

You are correct. I talked to Carrie Trekker and she said exactly that. They didn't think they would be accepting non-trial patients until late next year.

That's who I talked to. She's getting a lot of business from this board.

By the way Lew. did you have any luck with the Campath trials. I just noticed that you are in Dayton. I'm sure you already know this, but there are a number of sites in Ohio doing this study. One is actually listed as being in Dayton.

oo

Bob,
Are you sure this is a double blind trail? It seem as though it would only take about 1 day to know whether or not you were on placebo. Doesn't seem like a "blind-able" study to me.
Lars

oo

I believe they are 'blinding' it with a lower dose of Cy.

Naturally placebo wouldn't work!

I can't put myself into that situation again. The Campath trial's non-Campath arm will be getting Rebif. I know I don't respond to interferons well, so that one was out. Plus I was still too fresh out of Tovaxin and I didn't qualify. Right now we are going to try Rituxan first if we can get it worked out, and then I'm going to try and get into Rush in Chicago if I can't get Rituxan. It seems like, from what I've read and Arti's experience, that it is fairly fast acting. ??. I really don't know I guess, but I think it's maybe worth a try and I can still do immune ablation if that doesn't work out. This all, of course, hinges on how stable I stay. If I start tanking again, I think I'm going to go to the waiting room at Rush and set up residence until they accept me in.

oo

Loobie wrote:...and I can still do immune ablation if that doesn't work out.

I can't say I have explicitly seen a list, but are there any (long term) "exclusion" criteria based on previous treatments? especially ones that knock out part of the immune system themselves; such as Campath and Rituxan?

Hi Lew,
Don't count Tysabri out of your possible choices. I've seem many people do remarkably well on it. If I weren't allergic to it, I'd probably be on it today.
Sandy

Sandy,

Me and my neuro. are not counting out Tysabri at all. He has also stated that he has had some pretty good stories about it. He has a couple of patients that were not walking and they are now. He always tells me that they may have been in the midst of an aggresive relapse and would have come out of it and got back on their feet anyway, but he's seen those patients stabilize after they get into about 6 infusions or so. The reason he wants to try Rituxan on me is that he says he thinks that fact that I've had this for over 7 years now, makes Tysabri a little less appealing. I'm not sure I fully understand the rationale there, but I think he is seeing what he wants to see with Tysabri more from patients who are newly diagnosed. Don't hold me to that, but that's what I've been thinking.

Who knows? The same reason I didn't qualify for Campath may exclude me from Rituxan, but it's not a trial, so I think it's up to him to prescribe, whereas the Campath would have been part of a trial. Now that my site is a mini MS clinic with MS nurses and everything, they are doing all the JC virus testing and all that, so I would not hesitate to start Tysabri if he says we can't do Rituxan for whatever reason. I just need something. The 'roids seemed to have stabilized me, but stable for me right now still sucks. I just can't walk very far at all and always need my cane now. I don't feel like I've slipped at all this week, and that's a very positive change. So I want some 'stuff' in me to keep this train 'a rollin'.

oo