RHB-104 anti-MAP trial

[Mommabear]

I know many of you already are aware of this, but I am posting for those who may not know.

Those of you who are in the United States and I think Canada may want to contact Redhill or http://clinicaltrials.gov/ct2/show/NCT01951326?term=RHB-104&rank=2 to see if you can participate in the trial. Europe will see it between now and the end of the year, so keep tabs on it.

My son was unable to get in, but I think there might be a lot of you on this wonderful forum who could participate. I know there are a lot of skeptics about the relationship between Crohn's and MAP, but I also know that ultimately, all of you are willing to go with whatever works! And this just might work ...

If this works, then all you would need to keep yourselves healthy would be the vaccine ...

 

[InkyStinky]

Thanks so much! I'm so excited about all the current research into long-term solutions!!!

I'm not very familiar with research trials - is it likely that at some point they will open up to folks like me who are in remission via maintenance medication?

 

[mseve]

Super excited for this! My GI's office is participating in this. I'm excluded or I would see if I could do it. I am looking forward to the results with fingers crossed!

 

[Mommabear]

Inky stinky, I am not sure how they work either. Sorry.

 

[InkyStinky]

No worries! I'll be watching like a hawk for when this or the SSI trial needs folks looking for a solution instead of maintenance meds!

 

[wellen1981]

kinda relevant for this thread but in uk, usa and Oz you can get on the treatment plan using this method of treatment as rhb used prof herman-taylor (uk) and prof tom borodys(Oz) work under license for the trial.

USA is new mexico point of contact Dr
UK is kings college london prof herman taylor
and Oz is Prof tom borody in cddc sydney NSW

This is for the anti-MAP treatment

Philn's recent post covers it in a vid clearly

http://www.crohnsforum.com/showthread.php?t=69505

Main reason I am posting this here in this thread is for those who would consider this treatment who are not able to get on the rhb 104 trial.

 

[Kellix]

I thought about getting into the trial on phase 2, they had it here at 3 places in Atlanta, and I talked to the nurse and she was like yes everything you have said you could probably get on it. I then saw my GP and showed him, it he's interested because his Dad is a gastroenterologist and he knows more than a average GP about crohns. Anyway he was like Ok you have to get 3 colonoscopys over 6 months, and you could be getting the placebo the whole time. Also I have COPD and have had bronchitis multi times. if I was in the trial and that happened, my doctors couldn't do a thing. I'm going to probably show him this about the Dr in the USA, Dr William Chamberlain in PhilN s video says hes in Las Cruches New Mexico, but hes in Montana now. I want to have my doctor call him and get what drug amounts to try it. Because I would love to do the trial, they have one for stage 3 here, but having COPD and crohns and back problems, its either have the doctors talk and try it, or wait. I would rather them talk and to try it. I hate this disease.

 

[wellen1981]

I thought about getting into the trial on phase 2, they had it here at 3 places in Atlanta, and I talked to the nurse and she was like yes everything you have said you could probably get on it. I then saw my GP and showed him, it he's interested because his Dad is a gastroenterologist and he knows more than a average GP about crohns. Anyway he was like Ok you have to get 3 colonoscopys over 6 months, and you could be getting the placebo the whole time. Also I have COPD and have had bronchitis multi times. if I was in the trial and that happened, my doctors couldn't do a thing. I'm going to probably show him this about the Dr in the USA, Dr William Chamberlain in PhilN s video says hes in Las Cruches New Mexico, but hes in Montana now. I want to have my doctor call him and get what drug amounts to try it. Because I would love to do the trial, they have one for stage 3 here, but having COPD and crohns and back problems, its either have the doctors talk and try it, or wait. I would rather them talk and to try it. I hate this disease.

You and I have the same plan but I'm in UK. Want to work together and compare notes?
I'm about to contact Kings College London on Monday to start things rolling for me.

Hope it works for both of us and personally I hope I last long enough to be able to try this as my narrowing has become so bad that I am getting serious about considering admitting myself to hospital.
If I am forced to have surgery due to running out of time I will be sad :ybatty:

 

[Poppysocks]

I was on this drug for literally 1 week at the lowest dose. I stopped because the drive was too far and I also thought it was effecting my appetite.

My stool tests came back from my last visit and I've tested positive for cdiff. Im not having any diarrhea or weight loss. Not really showing any symptoms of it. So I guess it could be a false reading. But the rest of my stool test and bloodwork seemed to be consistent.

 

[Lady Organic]

I used to think there were very limited doctors believers of this treatment and i found there are so many trials locations for this therapy, even one not too far from where I live here in Canada. Im going to call the investigator's rep to inquire more about this trial.

the only problem with this trial as someone mentionned it is the placebo arm. I for one could never risk being in a placebo group. When my disease starts, it escalate very fast and time of action is limited. after 14 years of experience with this disease, I do not accept to suffer anymore and want fast intervention when I flare. the risk of complication or further extra-intestinal manifestation from untreated disease scare me too much now.