PROCHYMAL Phase 3

Do not worry about PML. There has never been one case of PML
when Tysabri is used as Monotherapy. The problem was that Ty was
combined with Avonex and this combo suppressed the immune system.
Tysabri is a miracle drug for many with MS. about 25000 are now on
Tysabri for MS without one case of PML. Good Luck

What CDAI score did you have to have to be allowed into 610. My trial coordinator told me that my
score had to be down to 150 to be able to be in 610. Seems like that would be asking alot but maybe im wrong. I think my score was really high at day 0, but I am not sure what it was. Im thinking it was around 400. I have received all of my infusions now and am pretty sure that I got some form of the stem cells. Slowly feeling better and better. I have also gained about 10 pounds in the last 2 weeks- which is always a sure sign!

Well- That sounds a little more logical to me. Ill have to check with her and see what the deal is. Yeah, it seems that no medicine works immediately - always takes time I guess to heal up previous damage. This seems to be a very popular forum topic. I was looking at the views and it was up to 23000. Wow!

Yeah- It looks like people are interested for sure so maybe there will be more that get into the trial.

Nothernguy; glad you are feeling better. Hope it continues. I am still waiting to hear about my eligibility.  At first, I was told they only needed specific information, now they are asking for the full file. I have been off Humira for 45 days and boy, am I starting to feel it.  Going downhill happens very rapidly.  Has anyone found anything to help combat the garlic smell? I work in close quarters and that concerms me. 

The garlic smell is not so bad by the following day. Just try to take the whole day off each time you have an infusion (if you can!)... There really isn't anything to be done about it. Since the DMSO is in your system, it needs to wear off and it does that through the pores and such. The next day it's much, much milder! Use a strong soap like Irish Spring or something in the morning and chew gum. That should help!

I went into the trial coordinators with the pertinent info (notes from my charts showing allergic reactions and such) and it went pretty smoothly. Don't you need to be off the Humira for 90 days before being eligible? Northernguy -- you might know that better than I since it never worked for me anyway!

Yes, it's been a long process. I went off the Humira so that I could get the 90 day wash out started but I should have had a response about my eligibilty by now.  At first I was told that there was only specific information they needed from my chart, but apparently they needed more. The file is large, as I am sure everyone's is around here.  Some of the notes about medication that has tried and failed is several years old so they have to sort that all out.  I hope to here something later this week or early next week. I smelled some DMSO at the feed store (they use it on horses).  It wasn't as strong as I thought but it definitely has that garlic like odor. 

Thanks, that makes me feel better.  I am so glad that you are feeling better. Just think, you could have gotten the low dose.  You are getting better, and maybe the higher dose would have even more dramatic results.  Just trying to look on the bright side.  Hope your healing continues. I agree with your questions. Iguess we will just have to wait and see. There are still unknowns with this technology but the future isn't very bright without some other kind of intervention for this disease.  Feel well.

Hi all,

I just met with a doc today about possibly enrolling in a study for prochymal. They're also doing one for an IL-12 inhibitor. We also discussed Tysabri, and he reiterated what's posted earlier about the PML. I'm one of those people who the first time I take something new, before the pill even hits my stomach I'm having side effects! I wish I responded POSITIVELY to the placebo effect!

Anyway, what is 610 and 603? I'm going to talk with the study coordinator and see if I qualify for either of the studies. I think I like the idea of prochymal better, and the doc told me that ortho guys are using it for rebuilding joints, and the cardiologists at yale are using it for heart issues. it's been around for a while. One thing that was mentioned is the randomization, and I brought that up. The doc told me that after an initial period if someone hasn't gotten the benefit, they can go open label and knowingly get the real thing.

I don't know if I'm allowed to ask this here, but just wondering if anyone hanging out in this topic is enrolled in the prochymal trial in New England?

It's great seeing the detail you've all posted about this. I mentioned the garlic thing to my husband... he said it could be appetizing. LOL

Susan

I am from Minnesota. I am going into study 610 this next Thursday. Hopefully this time I get the high dose- of course maybe I did the first time, who knows. Hoping that this second round of treatments will help me out alot.

That's a good question, Susan. Would you like to start an IL-12 thread and see if anybody answers?

Sorry you missed out on the Prochymal. What a disappointment.

It's great to hear about the Prochrymal again. It seems to me that there's no doubt this will be a leading Crohn's drug in the next year or so.... very amazing.