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PROCHYMAL, is there any new info on this?

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Posted 8/1/2011 3:37 PM (GMT 0)
just searching the web and came across PROCHYMAL trials from a few years ago with such positive results, including some members who even got to have it.

is there any recent news on this? would love to know :)
Posted 8/1/2011 3:53 PM (GMT 0)
I lost touch with the one person I knew in the study. Seems she did very well in the study, but then fell apart some after when it did not seem to be working as well...knew she was in the actual med group becuase her skin exuded an odor

I am guessing that other treatment have been found more effective and research is delving into those more...just a guess
Posted 8/2/2011 2:46 AM (GMT 0)
I completed a Prochymal study a few months ago. I first did the blind portion and probably got placebo, but then was able to do the open label so I know I got the real treatment. It appears to have worked well for me. Symptoms slowly improved over several months and it's still going. I also went gluten free following the study which I believe is helping, too. I have tried and failed most every other treatment out there, so Prochymal looks to be very promising. There were no side effects other than the odor that lasts a couple days.
Posted 8/2/2011 2:54 AM (GMT 0)
Last I heard Prochymal had re-entered Phase 3 trials with approximately 2/3 data having been collected. That was about a year ago, so I'd imagine it is closer now.

The company, Osiris, applied in Canada for approval for Graft vs. Host and was requested to enter more data before approval or denial. I haven't heard the results of that. But their financial reports are suggesting the response will come by the end of 2011.

Seems to me that once it's approved for something, it might be easier to move along, but who knows. It was the only drug that's helped me aside from 2 years of Remicade. I lost Remicade and have failed every other approved drug out there. Just hanging out waiting for something to come along...
Posted 8/2/2011 3:08 AM (GMT 0)
Anthony, are you in touch with a good teaching hospital there in Adelaide, and are you a member of Crohn's & Colitis Australia. Both these are your best bet of finding out if Prochymal is going into trial here in Aus, and of possibly becoming a trial participant.

Best wishes,

Ivy (also in Aus).
Posted 8/2/2011 4:26 AM (GMT 0)
this is so exciting, im not a member of crohns colitis australia but i thikn i'll join. As soon as this drug comes available in the states i will fly over and get it.

how can you let a surgeon anywhere near you when there is stuff like this coming out lol
Posted 8/2/2011 4:42 AM (GMT 0)
Sometimes your insides are already so damaged that surgery can be the best option, regardless of what meds are available.

Could you afford to get it without our PBS?!? It's pretty expensive...
Posted 8/2/2011 5:07 AM (GMT 0)
how much does it cost? my parents are willing to do anything that dusnt involve me getting my guts chopped out.
Posted 8/2/2011 6:28 AM (GMT 0)
I think it's on a par, annually, with Rem and Humira. Could be a little more, though: I'm not sure. And my memory is vague, and based on things I read a few years ago, when the trials were running.

Lovely that you're able to have such wonderful support from your family. I'm really glad for you.

Ivy.

ps. What are they doing for your osteoporosis?
Posted 8/2/2011 7:23 AM (GMT 0)
if it was the answer to my disease and cost that much anually my family would pay for it :)

i was originally prescribed fosamax which is a bisphosphonate but decided that really isn't for someone my age as it sort of locks in ur bones as they are, so im having hormone replacement therapy at the moment and taking alot of vitamin D and calcium supps, hopefully that will help reverse the damage
Posted 8/2/2011 6:09 PM (GMT 0)
Have you checked into Forteo for the osteoporosis? I've read it is being used for males as well.

I used it for 2 years and had dramatic results. T-scores reverted to where they had been 10 years previously. I took it a 3rd year w/less dramatic results but still improvement.

It is part of the parathyroid hormone.

There's another, the entire parathyroid hormone called Preos or Protelos ????, but not yet approved in US last I knew. Two drugs w/names similar to the above, one is the parathyroid hormone, forget what the other is. I get them confused.

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