Stem Cell research and Crohns

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Dory
Regular Member


Date Joined May 2005
Total Posts : 120
   Posted 8/27/2008 2:48 PM (GMT -7)   
I haven't been on in a while, so I'm sorry if this has been discussed before. 
Has anyone heard of this study or have any experience with it?  I just signed up to be part of the study.  It won't start for a few weeks, they need my med. records and a physical and ect...  Just wondering if anyone else had done it already or heard anything about it.  It sounds very interesting, they use adult, donated stem cells, apparently it has been working great in Crohns disease patients. 
 
Thanks,
Dory

Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 8/27/2008 3:45 PM (GMT -7)   
Sounds like the stage 3 Prochymal study?


I wish you the best of luck with this new drug. Be sure to keep us all posted on your progress because there are many people here patiently waiting for this type of therapy to become availalbe.

What meds have you been on in the past that haven't worked to bring you to this trial?

Dory
Regular Member


Date Joined May 2005
Total Posts : 120
   Posted 8/27/2008 3:55 PM (GMT -7)   

Yes, thats the study.  I figure even if it doesn't work for me, any research done for  crohns is a good thing.  My son, who is only  23, was just diagnosed with it.  So, just maybe there will be something out soon enough to help him.  I have been on just about everything, except Humira, had a very very bad reaction to remicade and that was the last new drug I've tried.  Nothing has ever worked for me, including surgery.  I've had 2 resections since I was diagnosed 10 years ago.  And I have NEVER been in remission.  I've thought about research studies before but they just scared me, now I'm willing to try anything, I have nothing to lose.

Thanks for your response,

Dory


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/27/2008 5:05 PM (GMT -7)   
Dory,
Good luck with the study and do keep us posted, here's hoping it will make life better for you (and others) in the future.
Jo

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/27/2008 5:09 PM (GMT -7)   
I signed up for this study but did not qualify because I hadn't been on steroids in the past 90 days, but now i am on them so i might try and be entered in a month or so. it sounds very promising and my doctor is great about trying to get me into clinical trials
Dx'd with Crohn's December 2004
Previous Meds: 6MP, flagyl, cipro, cortisone enemas, prednisone, remicade (3 1/2 years).
Currently Meds: Humira 40mg/week, prednisone again 30mg/day and tapering, augmentin, proctofoam enemas, percoset as needed
Supplements: Iron, B-12, B-6, Calcium, Vitamin C, soon to try bee propolis


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/28/2008 9:48 AM (GMT -7)   
Dory, I can't take remicade either. I too had a very bad reaction to it. I do hope this is a feasible alternative.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/28/2008 10:11 AM (GMT -7)   
Dory, I was in a clinical trial for Cimzia and the same doctors were starting one for stem cells recently but, after reading about it, I decided not to try.  It was a long commitment (2 years), especially if they don't work.  Plus, my Crohn's is in remission from Cimzia and Humira, so I figured I wouldn't be sick enough to get in (the arthritis from Crohn's is my biggest complaint currently).  Good luck...I hope you don't get stuck in the placebo group and I hope it works well for you!

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/28/2008 3:12 PM (GMT -7)   
Although the commitment is 2 years, the active portion of the trial is much shorter! There is a screening period then a 28 day period, including 4 infusions in the first two weeks. Beyond that period the initial study is only follow-up blood work type of stuff. If the first 28 days gives you a big benefit, you are eligible to enter a follow-on study.

Having been in the trial (follow-up, coming up on my one year follow-up) I highly advise anyone to enter this trial if they qualify!! It's nothing short of amazing.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/28/2008 6:22 PM (GMT -7)   
So you did well on it sr? Did the benefit not last long for you? I ask because I see you are on Tysabri.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 8/29/2008 12:15 AM (GMT -7)   
For those interested in stem cell treatments, note there are a number of studies involving Crohn's and stem cells. Not all involve Prochymal, and at least one is to use autologous stem cells, i.e.: stem cells harvested from the recipient's own body.

http://clinicaltrials.gov/ct2/results?term=stem+cells+AND+Crohn%27s

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 9/7/2008 1:42 AM (GMT -7)   
PROCHYMAL When Is it expected to become available for all of us?
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
Humira Start date 8/1/08


RxCrohnie
Regular Member


Date Joined Sep 2006
Total Posts : 146
   Posted 9/7/2008 1:46 PM (GMT -7)   
I asked my MD the same question. He said 2-3 years because they are still accepting patients into the Phase III study.
35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistula colon 2006, Rectovaginal Fistula 2008, 2 Ulcers Rectum, Joint pain. Kidney Stones. Dx with Migraines in 2002 and Ovarian Cysts with Endometrosis 2001.  Dx with Fibromyalgia in 2007 and IC in 2008.  Now receiving Cimzia, Topamax 300mg daily, Cymbalta 60mg daily, Prevacid 30mg, Maxalt, Vicodin as needed, Fish Oil, and Multivits   
 
RxCrohnie 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/7/2008 4:52 PM (GMT -7)   
Rider Fan -- I did very well on the Prochymal trial. Within 10 days life turned around... and this is after nothing else worked. Best I can tell, it lasted about 3 months. Not bad for 2 weeks/4 infusions! Most importantly for me, I responded better to that than I have to anything so far.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 9/8/2008 5:53 AM (GMT -7)   
What has happened to "Adacolumn(R) Apheresis Device in Treating Inflammatory Bowel Disease" studies ?

Male India 45 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol Iron Zinc B12 Omega Diagnosed MVP/MR in 2007 Dilitiazem Dothiepin


reynoldi
Regular Member


Date Joined Aug 2005
Total Posts : 244
   Posted 9/8/2008 6:01 AM (GMT -7)   
it is my understanding they are looking at prochymal not only for CD, but for any area in the body with inflammation. MS, Graft vs host disease(transplant) who knows what else. glad to finally see this moving
"If thou wilt be observant and vigilant, thou wilt see at every moment the response to thy action. Be observant if thou wouldst have a pure heart, for something is born to thee in consequence of every action." -Rumi-
 
CD for 15 years diagnosed at age 11(i get the crohns cycle)


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 9/8/2008 6:45 AM (GMT -7)   
Osprey101 said...
stem cells harvested from the recipient's own body.
But if you already have these cells and you've developed Crohn's, wouldnt it be better to use a healthy person's stem cells?
 
sr,  You mentioned you did awesome for 3 months.   Do they only let you do it the one time?  Is that why you mentioned 3 months?  New stem cells isnt something that would do a permanant fix?

33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/8/2008 7:57 AM (GMT -7)   
I don't know how Osiris plans to layout treatment options, but I can't see how infusing stem cells would be a "long term" ("cure") type of thing since the patient's immune system is already "programmed." The stem cell trials that are giving long term (years) relief is more the type where the patient undergoes chemotherapy to kill their own immune system then is either infused with their own (harvested) or a donor's stem cells. That, in effect, resets the immune system... Prochymal does not do that. (this is all just my understanding.)

The mesenchymal cells in Prochymal are neutral - from a variety of donors and "washed" - and any that are the not the right type are just flushed from the system. But the cells attach to the areas of inflammation when they find it and, it was explained to me, have a bit of immune suppressing qualities at the site. They stop the inflammation process and help rebuild healthy tissue.

I had a second round of infusions, but was re-randomized and got no benefit from the second randomizaton. So, I quit the study which was 3.5 hrs north of me... I was hoping I'd get the high dose and it would "fix" me enough to stick in remission longer. but that was a lot of driving for no benefit and there were to be no further randomizations.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 9/8/2008 8:04 AM (GMT -7)   
hmmm,  I thought it 'fixed' it - sort of how they are looking at stem cells to fix parkinson's or paralysis.   
 
Also, wasnt that program where they transplant (or do an enema) with baby poop a way for a permenant fix?
33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 8:01 PM (GMT -7)
There are a total of 2,735,695 posts in 301,325 threads.
View Active Threads


Who's Online
This forum has 151422 registered members. Please welcome our newest member, Gabor88.
277 Guest(s), 7 Registered Member(s) are currently online.  Details
Krimpet 🍔, Rikky1, Girlie, Sheeks175, Ggrlsav, bdavis, Mokes


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer