Hi, I'm new to the site. I live in Australia. Last year I was one of 240 world- wide spinal cord injured people undergoing stage 2 of the drug HP 184. I am a C5/6 quad, 6 years post injury, motor complete. I hd a fantastic response to the drug with increasing significant motor and sensation improvements. Aventis decided to run stage 3 in America and was recruiting there late last year. Since then nothing. Does anyone know if this drug is progressing to stage 3 trials or has it been shelved. Aventis will not answer my emails on the subject and the researchers who ran the stage 2 trial here are also unable to find out anything from them. Apparently by law the drug company must reveal if there were any adverse side effects and this has not happened. So there is a drug out there which can help some people as a treatment, (all improvements disappear within 3 days of stopping the drug) and which seems to have been dropped by Aventis for some reason, I suspect commercial. Anyone know anything...
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HP184 trial
- By kathyingwersen
- Posted April 23, 2007 at 9:43 pm · 6 replies
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- By Tiffiny
- Posted April 24, 2007 at 3:17 pm
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so, aventis might have discovered some ill side-affects to the drug you took and theyre not telling you? scary!
what kind of motor and sensation improvements did u see?
tiff
- By kathyingwersen
- Posted April 25, 2007 at 8:11 pm
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No I don't think there were any contraindications re the drug, at least none were reported on the net from participants, rumour was that while some had significant improvements they were not in sufficient numbers to make the drug company continue with developing the drug. But we don't know. Aventis has dropped the drug from there web site. My improvements were improved bladder and bowel control, increased sensation, movement in feet, toes, and legs where none were before, these improvements increased over the 6 months of the trial and were monitored over that period by the medical team here in Sydney. When the trial finished everything went over 3 days, it was devastating.
- By bjoy
- Posted June 30, 2007 at 7:30 pm
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I just read your last entry. I have never heard of this drug in America,I am a nurse and my daughter is a quad,C5-6-. I would say it probably was very expensive and they couldn't make it last so they may still be working on it. I 'm so sorry you had to give up your improvements,but I'm sure you will be contacted if they want to do further testing. If you do hear from them please let us know. Blessings Bjoy
- By kathyingwersen
- Posted June 30, 2007 at 9:21 pm
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Hi Bjoy, I feel I am a lone voice crying in the wilderness, there is a treatment out there for SCI and Aventis is denying it to us, All 8 of us doing the Sydney trial had the drug, no placebos, and all had improvements. I think your faith in Aventis doing the right thing, as opposed to te commercially correct thing is totally misplaced. We were the guinea pigs, we took the risks, as did participants in all the other countries that were part of the stage 2 trial, we were promised that we would be given preference in participating in the much larger planned stage 3 trial. Instead of this Aventis pulled the plug, firstly by stating stage 3 would be held exclusively in USA excluding all of the countries where the Stage 2 trials had been held, then by pulling the plug on the continued development of the drug altogether. If you want to know more follow-up with CareCure forum thread relating to this subject. Aventis doesn't even have the good manners to reply to my emails. I travelled almost 500 kilometers each time of 8 times in order to participate in this trial and underwent a massive loss of all gained function when it ended, I feel very let down by Aventis' indifference to me and more importantantly to all of us who could have been helped by this drug treatment. My goodwishes to you and to your daughter...regards Kathy.. my email is kathyingwersen@bigpond.com
- By grvideo
- Posted May 5, 2009 at 10:03 am
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Acorda experienced a "disappointment in phase III trials by not statistically hitting the outcome the trials were targeting," Dr. Cohen said. The drug does increase conduction, but it is difficult to measure since so many different systems are damaged, such as bladder and sexual functions. Additional trials were temporarily put on hold when Acorda received encouraging results in multiple sclerosis patients, said Dr. Cohen. SCI trials will resume once the company decides how to pursue the MS indication.
- By sheraphics
- Posted May 6, 2009 at 8:37 am
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Here are a couple of website I have found about a woman who was in the study in Boston and another about the study, but no study results. Maybe you could contact her and you could work together finding out what happened. She wanted to continue also with good results.
http://clinicaltrials.gov/ct2/show/NCT00093275?term=%22Spinal+Cord+Injury%2 2&rank=47
http://www.ketv.com/health/4862305/detail.html
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