delayed release PC

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kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 1/5/2011 6:56 PM (GMT -7)   
So, I am hoping some people can reply to this post to let us know how they are doing on the delayed release PC from KliniPharm in Germany.  I am in the process of trying to order some, and am wondering if you are having good results with the preparation!  Thanks for any replies! :-)

DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 480
   Posted 1/5/2011 8:15 PM (GMT -7)   
I started it two days ago. I havent seen any results yet and I seem to be going a little more than normal. I think its the bile acids they mix with it because the bm's are slightly urgent and have a yellowish color. I think its going to take all of the 3 months before I start to see results. I have had this disease for 8 years so its not realistic for it to be gone in a few days. Although that would be awesome! I will keep everyone posted once I see something positive.

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 1/5/2011 8:28 PM (GMT -7)   
what bile acids???

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10483
   Posted 1/5/2011 8:40 PM (GMT -7)   
I think most of the people who aree trying it are just receiving the pills. It's going to be a little while before they can give feedback. I wish we could find a group about this topic where there are more people taking it. Did you ask on the Chron's board?
Co-moderator: Ulcerative Colitis
03/07: Mild Proctitis | 08/08: Pancolitis! | 09/08: FLARE & Anemic Asacol (9) + Canasa | 01/10: FLARE AGAIN!! Asacol + Prednisone + Canasa | Currently: doing OK - Asacol + Canasa + Rowasa + 6mp + Allopurinol + Prednisone (tapering again...) + Ponstel + Klonopin + Ambien

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 1/5/2011 9:33 PM (GMT -7)   
no, good idea! i'll see about that, thanks!
UC since 1994

20 mg prednisone,75 mg mercaptopurine, rowasa enemas, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 480
   Posted 1/6/2011 1:40 PM (GMT -7)   
Alba posted this in another thread:

http://www.drmyhill.co.uk/wiki/Ulcerative_colitis_and_phosphatidylcholine_%28PC%29_in_the_gut

sakiv46
Regular Member


Date Joined Sep 2010
Total Posts : 24
   Posted 1/6/2011 5:07 PM (GMT -7)   
Danthaman,

Based on my experience with lecithin enema, yellowish stool is normal. It is most likely undigested residues of lecithin -- which is good in the sense that some PC is getting to the colon before getting absorbed in the upper GI tract. Don't know about the increased frequency though.

Keep us posted on your progress.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2800
   Posted 1/6/2011 9:04 PM (GMT -7)   
My rPC has been caught up in various US customs delays (combined with a scr*w up on the address labelling by someone in the shipping chain) and is not yet delivered, after 9 days - this for a shipment that was scheduled for priority overnight delivery.  Will be taking it though the day it finally arrives and will promptly report....
 
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb. 
 

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 1/6/2011 11:14 PM (GMT -7)   
thanks everyone - keep us posted!!!
UC since 1994

7.5 mg prednisone,75 mg mercaptopurine, rowasa enemas, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

Scarecrow
Regular Member


Date Joined Aug 2010
Total Posts : 222
   Posted 1/7/2011 7:17 AM (GMT -7)   
Please forgive my ignorance but, what is PC?

Levi
Veteran Member


Date Joined Nov 2009
Total Posts : 1615
   Posted 1/7/2011 7:48 AM (GMT -7)   
Scarecrow...It's Phosphatidyl choline and it's a lipid that is in our membranes throughout the intestines. It's found in soy lecithin, and some recent studies have shown that people with UC have diminished amount of PC in their lower GI tracts. The problem is, eating lecithin rich foods doesn't necessairily work because all the PC gets absorbed "higher up." So some folks are ordering these coated capsules to releases the lecithin closer to the rectum, or are using soy lecithin enemas. Look at the thread on page one or two called Missing PC is the main pathogenic factor in UC or something close to that for lots of info on it, and search for PC or soy lecithin for lots of other recent threads.
Diagnosed 10.2009 w/ proctosigmoiditis, possible IC/CUTE. 27 y/o
Symptoms since 10.2007
Apriso four 0.375g tablets per day
Rowasa enema, 3 grams every other night
VSL#3 DS one packet/day
Turmeric, digestive enzymes, boswellia, propolis, cat's claw, l-glutamine, fish oil, vitamin D, kefir, blueberries
Liver-Milk Thistle; Heart-Hawthorn

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2800
   Posted 1/8/2011 10:48 AM (GMT -7)   
11 days for me since my "priority overnight" Fedex was shipped and still it is bouncing around, for the second weekend now, currently in a customs purgatory... For those who have received their rPC, I was just curious while I sit and wait- are they horse pill sized or not that big? Any instructions as to whether to swallow them with a meal or between meals?
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb. 
 

Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 1812
   Posted 1/8/2011 11:28 AM (GMT -7)   
I personally have been doing a homemade lecithin enema for about a week so far.

Other things I started recently include:
-Taking L-Glutamine 1 tsp at a time 3 times daily on an empty stomach
-Taking VSL3 DS probiotics, 2 packets mixed in water in the morning, and 2 at night, on an empty stomach.
-Taking vitamins, an antioxidant, and for the next couple weeks an immune system booster herb

I have gone the traditional route and only had mild success. I've always had some sense of urgency since I was diagnosed with UC originally. I've done mesalamine pills, enemas, 6mp, entocort... and various drugs to try to help things like gut cramping. Prednisone works decently, but gives me mood swings and isn't a long term solution.

ANYWAYS... I am taking as much time as I need to rest and let my body heal. I've never taken quite the time that I am now, and am feeling better... but it is a slow process. From what I've read about the PC capsule OR lecithin enemas is that it is going to take a little while. I'll come on this forum and post more once it's been a month or so, and I know if I'm seeing results or not.
-Zach-
26 year old male.
Left sided UC since 2003, moderate in severity

New approach:
-No medications
-VSL3 DS - 4 packets daily (2/morn, 2/night) on empty stomach
-L Glutamine 1 tsp x 3 daily on empty stomach
-Homemade Lecithin enema nightly
-Antioxidants, vitamins, meditation, awareness throughout the day

DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 480
   Posted 1/9/2011 6:17 PM (GMT -7)   
Probiotic its not capsules its actually soy lecithin granules that are sprayed with the Eduagrit coating. I asked the pharmacy and they said to take it on an empty stomach with plenty of water. They also said that to not chew it and to swallow it intact. Its not terribly hard to do. I havent been on it for a week yet so it hard to say if its working. I will say that it seems my urgency has increased. I think since my disease is in such an aggravated state that its going to take longer to overcome the bile acid coating. Since everything under the sun agitates my gut. I will say that I have been juicing for the past two weeks and that has helped, especially cabbage. Beware the gas!

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2800
   Posted 1/9/2011 9:21 PM (GMT -7)   
Thanks for the heads up, DarthaMan- re-reading the full text papers I do see that although they use the term "encapsulation", they also refer to the "grandular preparation", so I gather this is indeed the samemethod  as was used in the double-blind studies, and that they are merely referring to the individual granules being encapsulated- interesting.  I guess there is a tiny spoon or scoop that measures out the 2 grams for an empty stomach dose? 
 
Good luck with a turn-around.  Well, good luck to us all.
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb. 
 

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2800
   Posted 1/10/2011 12:39 PM (GMT -7)   
Finally received my rPC, 13 days after it was shipped out.  Will start taking it later today!
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