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Missing PC Main Pathogenic Factor in UC

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Ulcerative Colitis
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Posted 1/8/2011 7:01 PM (GMT 0)
Would this work for colonic CD?
Posted 1/9/2011 5:16 PM (GMT 0)
As far as colonic CD, or crohn's colitis (CC) goes- the research and studies on retarded release PC (rPC) for IBD all focused on UC, and I believe the findings were that people with UC are very deficient in their own natural PC layer whereas those with Crohn's are not.  However - and this could possibly be a big "however" - one of the recent papers posted earlier on this thread (google "lipid based therapy for ulcerative colitis" and one of the hits should yield the full text article as a pdf for free) discusses how rPC not only protects the colon's mucosa but also seems to modulate the immune system and downregulate inflammation in other organs... so it seems to me that this could possibly have some potential for CC, and perhaps even small intestine Crohn's as well as other inflammatory disorders.  But obviously this is all just speculative at this  point, given that the studies were all thus far on UC patients

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Posted 1/14/2011 11:52 PM (GMT 0)
Does anyone have an update on their use of the Klinipharma PCC? I am getting ready to order form them and wonder how it is working for people? Or any other comments about their experience with the enteric conated PCC so far... Thanks!
Posted 1/15/2011 1:40 AM (GMT 0)
its still to early to tell but I am hopeful. It might take anywhere from 4 weeks to 3 months. Whatever it takes for me to get better!
Posted 1/15/2011 2:08 AM (GMT 0)
I would love to hear some updates too. Has anyone been taking this for a few weeks/months?
Posted 1/15/2011 1:54 PM (GMT 0)
I took it for a week but I was in such a bad flare that nothing would stick to the area - needed IV steroids to get it under control. I started again yesterday and will update in 3 months.
Posted 1/16/2011 2:57 AM (GMT 0)
My notorious gut sensitivity to many supplements has shown up again for me' with the rPC... I tried it one day only to have my gut pain flare up dramatically. The next day I stopped taking it and the pain went away. The next day after that I took just 0.5 gram total vs the 6 grams I took on day 1, but once again I got a big pain spike. So it looks as if my gut is irritated badly by the enteric coating sprayed onto the granules. It certainly isn't the PC itself, because I can eat uncoated lecithin without any ill effects. So, though I hope to use my rPC eventually, for now I am probably going to have to just do the PC enema route , even though it may be ineffective.
Posted 1/16/2011 4:00 PM (GMT 0)
Thanks for your reply Probiotic. Sorry to hear that you are not able to tolerate it. I wonder why they cannot put it into a pill and coat that... it would seem that they would need to use less coating. The coating is the same as is used in Asacol and other coated medications. I am going to call Coastal Compounding in Georgia. They do the LDN cream and are very service oriented. I wonder if they could put the lecithin (organic, otherwise it would be coming from GMO soy here in the USA) in a capsule and coat it...I guess it would be worth asking. One other thought is that there may be other ingredients in it that you are reacting to. It may be worth asking Klinipharma if that is a possibility...
Posted 1/16/2011 4:34 PM (GMT 0)
Thanks for the ideas.... Of course, the spray-coated granule technique was, I assume, that used in the studies. I react very badly to drugs like asacol but for those the reaction was MUCH worse than my reaction to the rPC, so I suspect in the case if asacol, Lialda etc it is the drug itself and not simply the enteric coating.
Posted 1/16/2011 4:59 PM (GMT 0)
Probiotic, I was a little confused with your reply. Do you mean that there have been a lot of people who reacted badly to coated meds like Lialda and Asacol? And may I ask if you have UC or Crohn's? So I take it, you are not on any other meds at this time?
Posted 1/17/2011 2:31 AM (GMT 0)
Probiotic I noticed that since I started my frequency has increase about 4-6 times a day. Which is a lot since I am going about 8 times to begin with. I am going to use all of it before I make any decisions. I think my threshold for tolerance is higher than others since I havent been in remission since 04. Good luck.
Posted 1/17/2011 9:50 AM (GMT 0)
probiotic, what's your 'recipe' for the PC enemas?
Posted 1/18/2011 3:09 AM (GMT 0)
To clarify my last post - a subset of people, myself included, cannot tolerate any 5ASA drugs, with their colitis worsening as a reaction to the drug. My reaction to , and I am just speculating, the enteric coating sprayed onto the lecithin, is not anything as severe as what I experienced with several 5asa drugs, but nonetheless did result in a big bump up in pain and some cramping. I am going to ask klinipharm if there is any alternative coating but I think I know the answer will be no.... As far as the enema protocol- I need to go check the link to an older thread that is either on this thread or the other Enteric PC thread' about a week ago. I'm letting that idea keep my hopes up for now even though I have pancolitis- my thought is that since UC starts in the rectum then perhaps it can still help.

Officially I have UC, although I have been told by my CR surgeon consultant that as many as 7 percent of people with 'confirmed' UC pathology turn out to have crohns post colectemy, perhaps years later (one reason I struggle, perhaps foolishly, got keep 'the colon beyond reason maybe) . Other meds currently include humira plus prednisone around 10 mg (I seen to flare at 5, just had to bump back up) and human 'whipworm (no luck with it although I had some limited success with pig 'whipworm eggs earlier but I simply cannot afford TSO , unless ut actually put me' and kept me' in remission, which it didn't.
Posted 1/18/2011 5:48 PM (GMT 0)
Probiotic I am the same exact way with the 5ASA drugs. They used to work but I tapered down on them about 6 years ago and ever since then they make me go. Within a few hours of taking ASACOL I am running to the bathroom with yellowish bm's very similar to the rPC. However I agree its not as bad as the asacol. I did try sulfazaline (the old one) and that was tolerated a little better but eventually a week later same thing. I am hoping that staying on it I will get over the hump. Its been two weeks to the day with no changes. I would say that I havent seen much blood but I also juice cabbage and some other veggies and that really seems to help with that. I did the PC enemas but I couldnt hold them in long enough for them to be therapeutic.
Posted 1/18/2011 7:36 PM (GMT 0)
Probiotic, that's what my GI (who's a prof. at a top university) thinks too - there's no way of knowing with 100% probability that it is not crohns. He believes in holding on to the colon, especially if the patient is younger.

I read some research claiming that it's the same disease (possibly MAP driven) - MAP invades the gut at different points and creates UC or Crohns based on age, gender, infection site etc.
Posted 1/19/2011 4:18 AM (GMT 0)
Hmm, alba29, now you have me' worrying... Now that rPC seems to have failed me'- probably thanks to that coating spray rather than the lecithin, I am pretty resigned to surgery in the next few months and just crossing my fingers that maybe lecithin enemas pan out- we shall see.
Posted 1/19/2011 5:51 PM (GMT 0)

Probiotic said...
Hmm, alba29, now you have me' worrying... Now that rPC seems to have failed me'- probably thanks to that coating spray rather than the lecithin, I am pretty resigned to surgery in the next few months and just crossing my fingers that maybe lecithin enemas pan out- we shall see.

Hi Probiotic,

What is TSO ? I have not followed your history closely. Can you post 2 lists, what you have tried and failed and what you have not tried ? I was surprised to see your considering surgery.

Thanks
Posted 1/19/2011 6:17 PM (GMT 0)
TSO is worm therapy. The worms only live for a certain period of time and people have different responses, some have complete remission, some don't have such dramatic results. I think he means he can't afford to purchase the worms every year or two.
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