This has probably been talked about but...MDX-1100?

Seems like it's able to do almost what Remicade / Humira does, but targets primarily only the colon. That's very nice. Downside is being an antibody like this it'l probably have to be given in a clinic via infusion. That's expensive, very expensive.

Here are the drug trial details

http://clinicaltrials.gov/ct2/show/NCT01294410?term=UC+AUSTRALIA&rank=5

I am currently on the open label drug study - and I have now had 3 infusions, and without a doubt, its a miracle drug for me. I get the the infusion fortnightly, and it takes about 1 and a half hours + a flush, so all up, including GI, blood tests, drug etc, its about 3 hours maximum.

I started the drug trial as part of the double blind trials, and thought I might of been getting the drug as I was seeing 'improvements' - but these where because I stopped eating - so no food means no output. I was bleeding heavily, and the pain was so severe that I was on tramadol and morphine.

My improvement in the last 4 weeks since being on the open label drug is incredible, I have gone from not eating/drinking (due to the chronic and copious diarhhea), extreme pain levels involving hospitalisation, dehydration, losing 28 kilograms since November 2011, too now being an almost normal person. I am eating (admittedly I am avoiding coffee, milk, onions, eggs and high sugar foods as I can not handle it) 2 meals a day now, rather than the 1/2 cup a food that I was existing on for the previous 3 months, from 15 - 20 toilet trips a day to 1! and also NO BLEEDING. I still get flecks of blood, but I am no longer passing blood in full flow, like an artery has been opened. I was so excited when I passed my first formed bowel motion, that I called my mum crying!! She was super excited for me too! Then I called my husband, and he was not all that impressed that we were talking about poo!

4 weeks ago, I was begging my GI to remove my colon, I wanted a permanent ilieostomy - I wanted to die. I was done, I was over it, and I could not handle it anymore.

Now - I can not believe how good I feel, I have people telling me left, right and centre how good I am looking now, as I no longer look like someone who is dying. (There words - not mine!)

how would you get involved in a study for this? would your doctor have to know about this drug? i have a colonoscopy on wednesday and will ask my gastro if he has heard of it. i would REALLY like to try it as i am running out of options.

It's a biologic. The report stated how the current drugs today hinder the immune system. This just specifically blocks a protein in the colon and only targets the colon while not affecting the rest of the body. The promising part is it says it promotes healing.

notsosickly, i've been looking and i can't find any studies in my town for UC. i guess i will have to wait and see if the FDA eventually approves it. i really hope it does.

Linahawk - I know a male that is on vedolizumab - and has been part of the phase 1 trials, and he said that it saved his life. He comes in once a month, and gets his infusion, and an hour later, he is back out the door again!

clinicaltrials.gov/ct2/show/NCT01294410?term=anti+ip+10&rank=2

the anti ip 10 drug trial is still recruting - and in south australia the details are

Australia, South Australia
Local Institution - Not yet recruiting
Bedford Park, Sa, South Australia, Australia, 5042
Contact: , Site 035

So - for SA - its not yet open.

anti ip 10 and mdx 1100 apparently are the same drug - just that they are yet to officially named it, from what I can see - the mdx 1100 trials were injections, where the anti ip 10 is infusions.

The qualifiers for the anti ip 10 trial where
No Tuberculosis
Must have Moderate to Severe Ulcerative Colitis (confirmed by colonoscopy within 2 weeks of starting trial)
Must not be pregnant or breastfeeding
No steroids for 8 weeks
No C Diff (or recent history of)

There was also blood tests and chest xrays.

Also - not responding to other treatments, or intolerance to other meds.

I had been through all the meds - except for remicade/humira as they are not available to UC in Australia - and have found that I do not tolerate quite a few meds at all. From liver failure to kidney shut down - and then also the drugs just not working.

So this was my last hope!

I got to go shopping yesterday - for 2 whole hours, and never once thought about going to the toilet! My kids think that there is something wrong with me, now that I am better!

I have had no bad side effects. Only good ones!

I have asked repeatedly what the side effects are - and each time I have been told that none have yet been found.

The big difference between this drug and the others is that the mdx 1100 is a human based biologic - which I can only assume means less likely to have severe side effects.

For example - my sister has multiple sclerosis - and she is currently receiving Tysabri infusions - and her list of side effects is a mile long. Tysabri is made from RATS.

mdx 1100 (or anti ip 10) is human based, so you can only assume that it is less likely to have severe side effects like, for example, PML.

The good side effects that I am experiencing (apart from the awesome recovery from the UC) are that my feet and hands are no longer numb, and that my left leg is also no longer numb and burning with nerve pain. For the first time in about 7 years, I have got hands/feet without feeling like I have playdough on the ends of my arms and a leg that I can feel, without being in excruciating pain.

After speaking to the trial co-ordinator the other day - she indicated that generally when there is a drug trial for UC, they also trial it in the areas of rheumatoid arthritis and multiple sclerosis as well - as these apparently are all linked in DNA/gene markers.

I have been checked for MS, but all the tests are coming back negative, however my neuro has indicated that I could still have MS - even though the MRI says other wise, due to me having severe distal ulcerative colitis - and she is not yet writing off the MS possibility - as I have too many symptons that relate to MS.


Its a cr@pshot. (Pun intended). I was desperate, and there are no other options for me except surgery, so I decided to take a risk, and I have taken on a drug that no one really knows what side effects there are (if any).

But hey - paracetamol is one of the most dangerous drugs in the world for side effects - yet almost everyone will pop a couple, without any thought.

ge0rge...

I'm in Australia as well How are you on this trial of MDX? How can I get more information from you? There is no email address in your profile.

I'm desperate and my Gastro here has finally just given up on me and as you know...it's hard enough to have a disease like this but when the gastro just says "i am out of options" you just want to die....

Please let me know where you are at with this trial and how I can get information about this drug in Australia.

Thank you!!!

Richard, thanks for the update. I thought this was going to be more effective :(

Just out of curiosity- don't all clinical trials stop supplying you with the treatment after the trial ends (or at best give you the option kf having a few months more treatment after the trial period ends)? If one can't keep getting a treatment (assuming it helps) forever afterwards, I have never understood what the point is, other than some temporary relief for a short while. Of course, the contribution to science is laudable, and I do not dispute that- but unless a trial is for a possible one shot semi-cure like the fecal therapy trial going on now in Canada, or if it can be purchased legally afterwards, than wouldnt trial drugs be at best nothing but a blip of relief?