Stem Cell Therapy

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wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 12/30/2008 10:07 AM (GMT -7)   
    Hope I'm not breaking rules by sending this.
 
 
The title is "The FDA Is Killing Crohn's Patients"
 
Moodindigo

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 12/30/2008 3:36 PM (GMT -7)   
Unfortunately, ever since Thalidomide (and before), it's been found that jumping into new meds without thorough investigation isn't a good idea. Untold risks for new modalities- particularly stem cells- will ultimately be discovered.

I can sympathize with his plight, but I can't say the untested therapy would be a good idea.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/30/2008 3:39 PM (GMT -7)   
Hi I was wandering if the guy had to go off his meds to get treatment including a placebo .I beleave that no one should be given a placebo if they are in bad shape and really don't understand why they do this sort of testing. I also think that a person should know what they are being given as it seems that man's health is being held up. How do Dr."s treat him with no information on what he took. Gee. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 12/30/2008 9:37 PM (GMT -7)   
As a person who benefited highly from Prochymal, and as a human being, I completely agree.  I had a friend pass away from cancer a week ago...  There was a drug which had completed Phase 3 but not approved...  His doctor said he was certain it would increase his lifespan but they could not get it.  It was approved one week after he passed.  One week.  The FDA really needs to consider the patient.
--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.  Doing well with this so far.  Dx Osteoporosis 10/08 waiting to start Forteo (pending approval)
--single mom to 11-yr-old girl


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 1/2/2009 4:53 PM (GMT -7)   

Hi Moodindigo,

 

Thanks for sharing the article with us!  It's definitely a frustrating, and sometimes devastating outcome.  The situation is definitely a complex one!  On the one hand, I think people rely on the FDA to ensure (as much as they can) that a medication is not only safe for human consumption, but also proven to be effective for the condition for which it's prescribed.  Unfortunately, this takes lots and lots of time and blind studies.  On the other hand, it's a shame that a person whose life is on the line can't VOLUNTEER to be given an experimental drug that's awaiting FDA approval, as long as the volunteer waves all rights to lawsuits etc.

 

By the way, Moodindigo, as I promised I have FINALLY (today) posted an update regarding my outcome and latest Crohn's treatment following the E. Nodosum I got from 6mp.  (Please see my update on my original posting entitled "Diagnosed with Erythema Nodosum---Questions".) 

 

Take care---


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!

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