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Missing PC Main Pathogenic Factor in UC

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Posted 12/2/2010 2:02 PM (GMT 0)
I  find it real interesting that they indicate that.

The concept that missing PC in colonic mucus is the main pathogenetic factor for development of UC. PC can be substituted by rPC, which cures the disease in the majority of patients. Take home message: rPC is, to our knowledge, the first causative therapeutic option for patients with UC

This is a pretty strong statement.

I think I tried research about 5 years ago as to the cause of the missing PC. I think the best I could come up with is high PL levels, possibly due to bacterial expression of PL.

Old Mike 

PS:I just found a statement in one of their studies which indicates that topical PC does not intigrate into the mucus.

http://www.ncbi.nlm.nih.gov/pubmed/21105858

Post Edited (Old Mike) : 12/2/2010 2:27:23 PM (GMT-7)

Posted 12/2/2010 2:07 PM (GMT 0)
yeah i saw that too, so i guess they believe they are treating the cause. that's how they seem to be selling it. anyway, if anyone wants to go to germany, there's an trial you can join i believe. we'd do it if kids were allowed.
Posted 12/2/2010 3:30 PM (GMT 0)
hi everyone, I'm new here. The trials are also in Romania and Ukraine, in addition to Germany.
Posted 12/2/2010 7:20 PM (GMT 0)
Thank you for posting this article. Very interesting.
Posted 12/2/2010 7:24 PM (GMT 0)
Hey Old Mike,

What exactly does that last line mean? That PC would have to be taken long term topically just like probiotics that we take don't permanently colonize the gut therefore we have to take them long term?
Posted 12/2/2010 9:22 PM (GMT 0)
Very interesting article! Thanks for posting it.
I'll have to go back and re-read that last line....
Posted 12/2/2010 9:22 PM (GMT 0)
Levi: If your talking about where the PC does not intigrate into the mucus, I believe it means that topical such as a enema does not work.
Old Mike
Posted 12/2/2010 9:24 PM (GMT 0)
The "take home message".... to me doesn't really say whether it would have to be taken on an ongoing basis, just that it is the first thing to address the cause rather than just quell the symptoms.
A glimmer of hope....I sure needed that today!
Posted 12/2/2010 10:20 PM (GMT 0)

Thanks for keeping us abreast of retarded release PC studies, Old Mike..  It is, of course, so frustrating that these studies have been going on- with very promising results at that- for many years now and still no product in the pipeline, just more studies.  A few years ago, I was naive enough to email a bunch of compounding pharmacies about encapsulating lecithin (PC) to do this and no one even bothered to reply to me.  The irony is that the encapuslation is identical to that used for asocol, lialda, etc ... and the contents are, as best as we can tell, simply lecithin, a non-rx OTC substance- but getting someone to combine the two for market could take ten years of FDA studies and monkey trials- talk about an infuriating wait.  I wonder if one could find a clone drug maker in China or India to make this stuff perhaps?  Also, if topical absorption is not possible, then just how does the retarded release PC work?  I thought it worked by hgetting through the small bowel and releasing the contents- topically- into the colon.  That part confuses me.

Posted 12/2/2010 10:37 PM (GMT 0)
Don't know Probiotic. Here is the article I got that from,it is in the first paragraph about the PC not intigrating into the mucus.
Old Mike

Just coyp and paste this link into your browser it did not come up active when I copied it.
http://www.annals.org/site/collections/rct_pdf/0000605-200711060-00004.pdf

Posted 12/2/2010 10:40 PM (GMT 0)
I just spent 30 minutes talking to a great compound pharmacist about this today. He said that making it enteric-coated is very easy. The problem is that this is a very toxic process for the medical worker's lungs so it must be done in a special facility and the worker must wear a sealed suit. Only the big pharmas have the labs and technology for this process. He also said that PC used to come in a powder too, but now it's only liquid or gel capsules.
He also told me that he's been getting tons of calls about enteric-coating this supplement, so the word is spreading.
As a financial professional working for a big Fortune company, I can guarantee that nothing will be done before deciding who gets what. It's all about $$$$.

I wonder if injection or IV will work if topical doesn't.
Posted 12/3/2010 2:35 AM (GMT 0)
I'm so happy to see this thread... thanks OldMike for posting. I'm a long-time member here, and have got my colitis mostly under control through a combo of hydrocort suspension enemas + Lialda + a host of a supplements, the most important IMO of which is turmeric.

That said, I STILL HAVE COLITIS. I read every study that comes out about UC, and I'll tell you that from my perspective, rPC is the ONLY one that holds real promise of literally *treating* the underlying issue of this disease, as opposed to ancillary factors like immune hyper-response. That means it should be the most effective, and because of the use of a harmless OTC ingredient which generally lacks collateral damage (e.g., by not having to suppress your immune system), it should have the lowest side effect profile.

It is purely infuriating that this treatment literally sits within a stone's throw from millions of UC sufferers, but the likelihood of us getting it in the reasonable future (e.g., a DECADE!) within normal means is essentially nil. We do need to find a compounding pharmacy and give this thing a real shot. I'm not afraid of ingesting lecithin coated in the same stuff that covers Lialda, Asacol, Pentasa, et. al.

The study OldMike posted says essentially, you can't eat it, because the PC gets absorbed 100% in the small intestine instead of going to the large intestine, and then cryptically, that "Topical PC applications (enemas) do not integrate into the mucus." It says this to justify whey they had to use a delayed release pill form. The weird part is that delayed release then would presumably dissolve and TOPICALLY apply the medication, right? It doesn't back that claim up, nor put bounds on it. It's entirely possible that the enema issue isn't pharmacological, but practical, in that maybe it requires a megadose of lecithin in enema form to reach the right part of the colon, which wouldn't be practical in a clinical trial...? Undoing even THAT argument is that the study wants the medication to be released in the distal (closest to anus) part of the colon-- which is precisely where an enema would excel!

Nevertheless, we have to either buy this from Europe or contract a manufacturer here in the states. I wouldn't trust China or India pharmaceutical safety in a custom-order environment. If we band up and get 20 people who want in, we'd probably have critical mass.

Putting this out there. I'm in.
)
Posted 12/3/2010 11:39 AM (GMT 0)
there's a pharma in Frankfurt that might does it and I emailed them yesterday.
Posted 12/3/2010 12:37 PM (GMT 0)
Let us know what you find out, OK?
Posted 12/3/2010 12:51 PM (GMT 0)
I agree with the others about wondering why an oral pill would work but an enema application would not. I do know the poster Sakiv46 used a lecithin enema and he credits that with a prolonged remission. Maybe AKB is right that the "mega dose" wouldn't be practical in a trial. Sakiv said he used a whole scoop of lecithin and I picked some up from Whole Foods, the same product he used, and it was a very large scoop (15g). He also said it took a few weeks to see results.
Posted 12/3/2010 1:06 PM (GMT 0)
So.... have you tried it as enema yet? I would be very interested.
Posted 12/3/2010 1:16 PM (GMT 0)
Well, I mentioned it to my doc and he said let's wait for the flex sig and see what we have before we go trying alternative treatments. After he determined my blood is coming from hemmies in all likelihood and had a clean scope to the distal transverse, I can't decide whether to stick with just Roawasa or add some lecithin. I'm afraid to start monkeying around if I'm doing OK right now, ya know?

If it does work for others as well as it did for Sakiv, it seems to be a good deal, the tub was $15 (Whole Foods) I think and would probably last a month or so.
Posted 12/3/2010 11:39 PM (GMT 0)
Great job Alba! Thank you. Please keep us posted.

I contacted the author of the article and asked the key questions from this thread-- can it be done in enema form and if not, then what is the method of action for the delayed release capsule. Will post back if I hear back.

Go team!
Posted 12/6/2010 7:50 AM (GMT 0)
I heard back from the lead researcher. He said that topical application (enema) CAN be useful, however the treatment has to remain in contact with the colon walls for "a while." For that reason, he said a delayed release tablet is better.

This is pretty powerful news, I think. It seems to mean that a PC enema will at least be SOMEWHAT useful-- and a heck of a lot better in the meanwhile than waiting for this drug to make the market a dozen years from now (if ever). Does anyone here know how to pull together a legitimate PC enema?
Posted 12/6/2010 11:26 AM (GMT 0)
Very interesting. Thanks for posting.

I did a bit of research, and ...

The article "claims that reduction of phosphatidylcholine (PC) in colonic mucus impairs the mucosal barrier and, thus, causes attacks of the commensal bacterial flora to induce colitis. Thus, mucus PC substitution could provide a causal therapy for UC."

Phosphatidylcholine is the systematic name for lecithin.

Lecithin is found in egg yolks, liver, meat, fish, cauliflower, cabbage, soybeans, sunflower, and whole grains as well as ice cream, margarine, and chocolate bars.

What is interesting to me is that ice cream is the only dairy product that contains lactose that I have heard others say does not bother them. I never knew why though, because the explanation I was given did not make sense.

I will have to add eggs to my diet and see what happens. I know that eggs improves my skin. I don't get as much acne when I eat eggs. However, eggs are also considered pro-inflammatory; so I haven't tried them for IBD.

Chocolate makes my poo too soft though.

The spinach and sunflower seed diet seems to help many, including me. You can even buy sunflower lecithin, which is considered a healthier alternative to soy lecithin.

Then there are lecithin supplements. Please note that in high dosages, lecithin supplements can cause diarrhea. There is also debate on whether or not lecithin supplements causes weight loss or weight gain. It's supposed to break down fat, but then it contains fatty acids. Perhaps it can help break down fat so that it gives it a smoother appearance.

I will have to add eggs into my diet and see what happens. However, I'm in remission. So I won't experience any improvement even if lecithin helps.

Post Edited (subdued) : 12/6/2010 4:39:38 AM (GMT-7)

Posted 12/6/2010 11:30 AM (GMT 0)

Old Mike said...
Levi: If your talking about where the PC does not intigrate into the mucus, I believe it means that topical such as a enema does not work.
Old Mike

I would think topical would mean putting it on your skin. Lecithin is used in many cosmetics. Perhaps that's what they are referring to.
Posted 12/6/2010 11:46 AM (GMT 0)

Alba29 said...
hi everyone, I'm new here. The trials are also in Romania and Ukraine, in addition to Germany.

Hi Alba29

what information do you have about the trials in Romania?
Posted 12/6/2010 12:46 PM (GMT 0)
AKB:

https://www.healingwell.com/community/default.aspx?f=38&m=1946680

Try this thread. Scroll down towards the bottom to the post by sakiv46. Administering the PC topically sure seemed to work for him. I belive the original study used two grams of PC and it looks like one scoop of the soy lecithin he used was 3.5 grams. Maybe that has something to do with the enema seeming to help him more than the researches would have thought.

Subdued: I don't think adding the lecithin to your diet will do anything. The amount of PC in your intestines decreases and there is bascially a gradient between the small intestines, through the colon and the rectum. You have the most PC higher up and the least at the rectum. Any PC in food will already be absorbed by the time it reaches the reactum or distal colon, unfortunatley. This is true to even in non-IBD people.

Posted 12/6/2010 1:12 PM (GMT 0)
There are several herbs such as slippery elm that act as a demulcent to smooth the intestinal lining. They probably work but I find that phosphatidylcholine capsules much more effective. I have been taking them for a while and I feel they are helpful. But perhaps it's only placebo.

Phosphatidylcholine may be broken down by the digestive system before it arrives at the colon but I don’t think that is a reason not to take it orally. If it is broken down then its components, choline and fatty acids, are absorbed by the body. That might mean your body then has the nutritional comoponents to manufacture PC for the rectum and lower colon. Just my thoughts which may or may not have any truth behind it.

So if UC is partially the result of the body’s deficiencies of essential nutrients to produce phosphatidylcholine in the colon then oral PC should help. Or maybe not. But I do know that FOR ME PC capsules seem act as a demulcent to smooth things out in the digestive system even better than herbs like slippery elm.

So even if taking PC orally has no effect on UC, it does have the following benefits:

"The most important effect of Phosphatidylcholine is its remarkable ability to reduce plaque depositions in the arterial walls. It also lowers cholesterol and homocysteine levels. Studies in lab animals have shown that it increase their life span by up to 36%."

* PC reduces Angina Pectoris pain and frequency of attacks
* PC lowers LDL Cholesterol
* PC increases HDL Cholesterol

I noticed that in the past two years since supplementing with PC my HDL has risen from the low 40's to the high 50's. Don't really know if it is the PC or some of the other supplements I have added, but I will continue taking it.
Posted 12/6/2010 3:21 PM (GMT 0)
Alin, it's Romania and Lituania, see the link.

http://clinicaltrials.gov/show/NCT01011322

Babeinthewoods, I plan to ask my G docs if they would recommend IVs, usually done for liver disease.
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