Hope

[Mehita]

I had a little freak out moment tonight at dinner. I was looking at DS and thinking how good he looked (3 months remission) and then it hit me that he's doing well at the cost of pretty potent and scary medication. It got me thinking about the future and how desperately we need a cure.

Of all the things in the pipeline, what do you have the most hope for? One of the new meds? The research on bacteria? Stem cells?

If you have links to share, that would be awesome.

 

[crohniekid]

I'm too new at this to really guess. But I have my suspicions that it is a virus or bacteria that is the main culprit behind ibd. I have high hopes in the MAP type research and also the transplants.

 

[Twiggy930]

I am hopeful for the site specific immunomodulators. Q Biologics has a Crohn's trial going on right now. I've got my fingers crossed!

http://www.qubiologics.com/

 

[kjkenny45]

Well waiting or expecting the big pharma to come up with a cure is, sad to say, very unlikely. Why? What solve a disease that generates over 10 BILLION dollars a year? Think about it. Same goes for cancer. Sorry to be so blunt but after 4 years of listening to medical professionals and getting SICKER, reading medical journals, researching various medicines on the FDA website along with studying trials, this is my conclusion.

So far the only medicine that has helped crohns for myself is LDN (Low Does Naltrexone).........I have used it since Sept 2013 and so far great results......I will have my annual colonoscopy this summer and then we will know if I am healing or in remission.....

LDN is an orphan drug which means NO pharmaceutical company has a patent on it so do not expect your GI specialist to be suggesting it as no one has a financial interest with that medicine. It was approved by the FDA in 1984 for a different purpose and has virtually no side-effects (unlike Humira....possible side effect is cancer).

Well I hope this helps someone. I am so happy I have been diarrhea free for almost 6 months and want to spread the good news. I was a skeptic too when I first read about this back in 2011 and wish I did not procrastinate in trying it. Nothing to lose and sooo much to gain like feeling better and enjoying life again! Most valuable asset we all have is time........do not waste it!

Be good!

 

[Jmrogers4]

TNI Biotech has purchased the orphan patent right on LDN to use for IBD. Last I checked they were looking into doing Phase III trials but have not heard anything for quite some time on the status of that.
My son was on LDN for about a year and did really well unfortunately he had a flare that started in August and we were unable to pull him out of it on LDN alone and he has since switched to Remicade. I will say LDN does have a lot of promise but it takes a long time to become truly effective My son did not gain weight and I had to remind him daily to eat (not something you should have to do for a teenage boy). It has been a complete turn around since starting remicade and I believe we may go back to LDN but it will not likely be until he is done growing.
I like Twiggy think the SSI shows great promise and can't wait to see results from the trial.

 

[kjkenny45]

LDN is not a cure all and no big pharma will endorse it since there is no profit motive. Since it was already approved by the FDA in 1984 it is now technically "off label" so you can get it regardless of the FDA process. There was a study completed in 2007 regarding children with crohns on LDN and they had a 89% success rate meaning improvement of crohns via endoscopy or colonoscopy.

I encourage you to read a bit more on the effects of the biologics on younger people as some of the meds could be doing more harm than good. Remicade is similar to Humira and Humira is not suggested for anyone under 18 years old as they have a 34% problem rate with that drug for young folks.

Also regardless of the meds taken, diet is the most important and critical factor with Crohns as you should not be eating anything greasy (no French fries, etc), minimize processed foods, no junk and certainly eliminate garbage like soda if that is still being consumed. One can not eat crap foods and expect improvement. Folks like us with Crohns have to be super selective with food since we are very sensitive.

 

[Jane and Nick]

Hi KJkenny,
I am sure we are all very pleased for you and your success on LDN. I can assure you, that we are all VERY aware of the possible side effects of using biologics. It has caused many sleepless nights and tearful discussions to come to a difficult but educated decision on behalf of our children.
I hope you continue to have great health.

 

[Mehita]

The 2007 LDN study with the 89% response rate did not involve children, but the 2012 study did. Unfortunately, there were only 14 children who participated in that study. Of the 67% who improved, their disease was classed as "mild", a rare classification in children with IBD and one that I don't think many kids here on the Forum fit.

I have no opinion on LDN, but I strongly believe that pediatric IBD is a whole different ball game than adult IBD. It's usually more severe, it doesn't always follow the rules, and we have to take our children's growth and development under consideration. I can guarantee no parent here has made the biologic decision lightly, Kjkenny.

As for big pharma, I have to say thank you. My son essentially lost a year and a half of his life being sick and missing school until he started Remicade. Whether it is Remi or LDN, someone somewhere is making a profit.

As a parent, I have to stay hopeful that a cure is on the way. Kids reflect their parents actions and beliefs. The saddest thing in the world is a kid without hope.

 

[Jmrogers4]

KJkenny, I really am happy you are doing so well on LDN and I hope it continues for ever. The Jill Smith Pediatric Study using LDN on children used PCDAI and not endoscopy/colonoscopy to determine effectiveness. Here's a link to the the study http://www.crohnsforum.com/showpost.php?p=563433&postcount=22
As with all the drugs and how hard it is knowing you are making decisions possibly effecting the rest of their life. I believe you need to be aware that there has not been a lot of research done on the pediatric component and LDN. Only 1 study so far. Yes it has been around for many years and used in the adult population in much higher dosages for narcotic dependency.
As most of you know this disease can change gears very quickly in the pediatric population and LDN (at least in our experience) takes a long time to work. Even following a specific diet. We started LDN and SCD at the same time. Our issue with that was we just could not get enough calories into him and he was in the 1st percentile for BMI. We switched to Paleo, again he was just not gaining weight and settled on gluten free for many months although when we added gluten back in it did not make much difference.
I have never really worried much about diet other then trying to get calories in Jack because he has always been a picky eater in a good way. He doesn't like soda, prefers water. He doesn't like sweets (except ice cream) and his favorite after school snack is a bowl of spinach with a little salt and pepper and water sprinkled on it and microwaved for a minute (I know strange kid).
Unfortunately for us LDN just wasn't enough to keep him in remission and it also I think further decreased his appetite and we needed something that would work quickly. Looking at my child today, he is a completely different child then he was a few months ago, he is happy, healthy and growing and I think that is all we can ask for. We assume risks for him every day I let him walk out the door, play a sport, get a car but his quality of life is worth it.
I'm still a big fan of LDN but now I'm also a fan of remicade and pretty much anything that will allow Jack to live as normal as possible.

 

[Mehita]

Spinach? Love that kid

 

[DustyKat]

TBH? I don’t know what I am looking, I just want a cure in whatever form it comes. :eek2: :lol:

I guess though that from our perspective I am looking for something that solves the genetic riddle and targets that. For us I can’t help but think there is some flaw there and unless that is fixed then I am only ever supplying them with a bandaid.

As to now, I read and target everything about Ileal Crohn’s and what works best for that while I wait for that all elusive cure! And in the meantime my mantra is…every minute, every hour, every day, every week and every year they remain in remission gets us one step closer to the holy grail! :worthy:

Dusty. xxx