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britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 7:33 AM (GMT -7)   
Does anyone know when Prochymal is anticipated on being approved?  I have heard great things about it, and have yet to join the clinical study group for various reasons.  VERY interested in trying it.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2009 7:49 AM (GMT -7)   
If you click on our search button and enter Prochymal you will find a recent post about this. I believe it has been stopped because of problems with the company.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 8:43 AM (GMT -7)   
Thanks... how disappointing, though.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/8/2009 8:50 AM (GMT -7)   
It was not stopped due to a problem with the company. That particular study was stopped due to study design flaw. They are re-designing the trial and will begin enrolling after that is complete. The drug is still showing excellent safety records. Here is a link to the company's website news feed. http://investor.osiris.com/releases.cfm
--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
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  cipro/flagyl cocktail 3/25/09  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2009 9:08 AM (GMT -7)   
Sorry about that, I remembered the post, but forgot the exact details:)
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 9:09 AM (GMT -7)   
Wow, thanks guys. I did read the info from their website... sounds like people were so wanting to try the REAL stuff, that they lied about the placebo working. I understand wanting relief, but that just sets things back for everyone! I am glad to hear things are looking up, though, and I hope it does get approved. I need something that actually works!!
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/8/2009 1:53 PM (GMT -7)   
It works, I go in for my one year CT scan and follow up at the U of Minnesota tomorrow. There was a problem with the Placebo effect. Sounds like I will be going on Tysabri now with TPN to gain some weight. Not excited about going on the Tysabri , but at this point I am desperate and would do anything to feel better. No fun when crap is running down your pantlegs in public and there is nothin you can do about it. My doc and I both feel that I got the Prochymal in the first arm of the study because of my rapid weight gain and blood test numbers. When my health declined and I was put into the second arm of the study my health never got any better and my blood tests went whacky again, so the doc felt that I had been given the placebo on the second arm. The stuff works and I just wish I could get it. I almost feel betrayed or cheated that I cant get it and now I have to go on Tysabri until I can get it again.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/8/2009 2:07 PM (GMT -7)   
I agree, that doesn't seem right, ethically or medically...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.
 
Go Saskatchewan Roughriders!


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/8/2009 10:10 PM (GMT -7)   
I understand too. I was hoping for that open-label. I had to move to Tysabri after Prochymal too. It is scary, but keep in mind that trying it is very, very low risk. If it works, then you can decide how you feel about the risk. And, if it works, the risk is easier to accept. Like you said, there is only so much a person can live with and if there is a chance that Tysabri could hold you until the stem cells come around, it's a valid option! So many thousands have taken it safely. And, now there is another med that's showing PML risk. It's tough to know how many of the immune modulators have the potential and we just don't know it yet. (Raptiva - a psoriasis med announced today) I could never get off the steroids while on Tysabri (for 6 months, 7 infusions total) so I stopped it.

northernguy - have you tried Cimzia yet? I still don't know for sure how much it's helping as I am still not off the steroids, but I'm better than I was by enough to keep it up.
--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
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  cipro/flagyl cocktail 3/25/09  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/9/2009 6:02 AM (GMT -7)   
sr5599- My doc wants to put me on Cimzia, but he doesn't sound very optimistic. Apparently, Cimzia is so chemically similar to Humira that if you didn't respond well to that, then you are not likely to get much help from it. Basically, it's almost the same as Humira, just a different company manufacturing it.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/9/2009 8:01 AM (GMT -7)   
My problem with Remicade and Humira stemmed from the fact that I needed it twice as often. At weekly shots I was doing ok (not great/remission, but getting along). The insurance company denied coverage.

I'm not a chemist or a scientist, but what i understand is that Cimzia's formula has been "pegylated" meaning that it has an increased time in the blood. I had two GIs, just went back to my original because my first was not really open to trying it. I figured that it can't hurt to try it and what if I happen to be one of the people who rejected Remicade and Humira and still responds to Cimzia. I figured it's worth a try... So that's what I'm doing. Tale is not fully told yet though. Ideally I can cut back on my steroids. But I am better now than I was when I started. There's been Cipro/Flagyl too, so it's not all clear about me and Cimzia. I am just being optimistic because it seems better for my mind!

Added:  here's a link which explains pegylated:  http://www.medicalnewstoday.com/articles/105132.php


--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
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  cipro/flagyl cocktail 3/25/09  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/9/2009 3:04 PM (GMT -7)   
Absolutely... stay optimistic!  If the subtle changes in the makeup provide a longer lasting effect and give more relief, then I hope they work for you.  Good luck!!
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/9/2009 7:21 PM (GMT -7)   
Hi, I was just taken off of the Cimzia yesterday by my doc. I have been on it since last Sept. and it hasnt done anything. By the way though, I also failed Remicade and Humira, so I am not an Anti- TNF responder. I had my One year follow up for the Prochymal study today. It was just a physical exam and a CT scan. My doc now wants to put my on TPN with Tysabri treatment. I am 5 9 and 135lbs , so if a stranger saw me on the street they would just think I am a skinny guy, but if you knew me 4 years ago I was 170lbs and athletic. Hopefully , the combination of the TPN with the Tysabri working will bring me up to that weight again, would be nice for my clothes to fit better.
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