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Prochymal, could it be the answer??

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Crohn's Disease
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Posted 1/27/2011 8:14 AM (GMT 0)
hi guys just be reading alot of good stuff on prochymal stem cells, just wondering if my hype is justified?

thanks!!
Posted 1/27/2011 12:47 PM (GMT 0)
Quite possible. Might be a year or two before it hits the market, although I think the FDA have fast tracked it, as in trying to get it to the market as soon as possible.

My opinion is that stem cells are the future of medicine and in finding a cure for Crohn's, if not a cure the next best thing. :)
Posted 1/27/2011 4:55 PM (GMT 0)
It won't be a cure... I was in the trial. But, nothing has helped for me except Prochymal. (At least since I lost Remicade 5 years ago) I was in the original base trial for phase 3. They've had their ups and downs, but they are in process of approval for Graft vs Host right now. The "regulators" requested more information and Osiris is 90 days to provide it. That was a few weeks ago. I know I'm keeping a close eye on it!

Hey Dave123... Any update on your treatments? You're in open label now, right?
Posted 1/27/2011 6:07 PM (GMT 0)
Yup, I started the open label and had my first treatment a week ago today. The treatment itself was exactly the same as when I was in the blind study. The only difference I noticed was that the "garlic" smell was much less. Even the study nurse noticed it less. I guess they put more of it into the placebo to make you think you are getting it? I'm using this difference as the only indication that I did in fact receive the placebo in the blind study. There still is a chance that I got the real thing and it didn't work for me.

I've also been looking for any signs of improvement in symptoms. I think a week is still early to see anything. How long did it take you, sr5599? I've heard others started to see some improvement after 2 weeks. I have noticed some very subtle changes to my symptoms, but I've been in enough clinical trials and experimented with so many medications, that I'm not getting hopes up yet. The changes I've noticed are a little better formed stools, slightly less joint stiffness in some of the mornings, and I actually had *one* day where I didn't go to the bathroom, or even feel the urge, for almost a 24 hour stretch. It was easily the best day I've had in 6 months. But the next couple days after that were back to the same.

I still have 4 more weeks until the next treatment. The best signal that it's working will be if I start to gain back weight I've lost over the last 6 months. That's how I always know when I've turned the corner on a flare.
Posted 1/27/2011 10:36 PM (GMT 0)
Sounds like they changed the format more than I thought! I had infusions at day 0, 4,7 14 and it sounds like you're having them every 4 weeks? But, my dose was likely different than you are receiving. I don't know what dose I got, they won't tell me. I still have paperwork somewhere and could look up with the high and low doses were (randomized) if you know the dose of your open label. Might be interesting to see what they've how they've changed things in the re-design of the trial.

I still have all my lab results from the trial, though. Looks like my CRP came down to half at 2 weeks. My WBC dropped from 18 to 13 at week 2. I did not go into a full remission, but healed 50-60%. So... the activity came back after a month or so. I felt like I really needed more but maybe I got the low dose, who knows. I may never know! (Beyond lab results, etc...)
Posted 1/27/2011 10:45 PM (GMT 0)
In the blind study, I did 0,4,7,14. The open label is days 0,35,70. The reason is because if I was receiving stem cells in the blind, it would be too much to give 3 more rapid doses. Your response came at 2 weeks but you had already received 3 infusions so I'm not sure what the one dose will do for me, or how high it was. More waiting I guess.
Posted 1/27/2011 11:17 PM (GMT 0)
thanks for the replies guys, this looks exciting, hopefully this treatment can provide answers even if one person gets better it would be well worth it
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