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Missing PC Main Pathogenic Factor in UC

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Posted 12/21/2010 11:27 PM (GMT 0)
Old Mike,

The German research group has been using lecithin granules wrapped in enteric coating in their clinical trials. If granules delivered via enteric coated pills lead to increased concentration of PC, why wouldn't grannules delivered via enema work? They have done measurements of PC in mucus before and after treatment, and found that the PC level increased four times. By the way, lecithin granules (at least the type I use) do not dissolve in water, they just form a nice suspension.
Posted 12/21/2010 11:30 PM (GMT 0)
Probiotic,

What did your Dr write in the perscription slip? Delayed form phosphatidylcholine?
Posted 12/22/2010 2:53 AM (GMT 0)
for those of you who have tried the oral PC from klinipharm in germany, has it helped? and how expensive was it, and how long did it take for it to ariive?
Posted 12/22/2010 2:53 AM (GMT 0)
Sakiv46, after discussing this with the pharmacy's Dr. Schatten on the phone, I had my doc write the rx for "enterically coated lecithin, 2 grams, 3 x per day" plus the amount of supply requested (6 months in my case).  The rx is apparently required to facilitate non-rejection by US customs. 

Kate- regarding cost, it is currently 26 euros per 50 grams, with the normal dosage being 3 x 2 gram capsules a day in accordance with the study dosages, i.e. 6 grams per day.  So for example a 3 month's supply would thus be 30 x 3 6 = 540 grams.  For every 500 grams, one gets a bonus of 50 grams free, so a 500 gram order yields 550 grams, meaning that for 260 euros (I think a little over $350) one gets a 3 month supply.  Clear as mud?  Actually works out similar to the expensive probiotics that i currently take.

  

Posted 12/22/2010 3:55 AM (GMT 0)
Thanks probiotic. Please let us know when your fedex shipment arrives.

Now I need to find a doc to write the prescription. Maybe I will try some alternative type because my GI won't touch anything remotely non-mainstream.
Posted 12/22/2010 8:55 AM (GMT 0)
Kate - We are in Italy and the package arrived about four days after we initially contacted them. We required a prescription regardless of the fact that the package didn't go through customs.
Posted 12/22/2010 2:11 PM (GMT 0)
Will do, sakiv- yeah I consider my alternative MD to be my mainline doc and my GI to be merely "adjunct" therapy since the latter is completely closed to alternative/ non-AMA approved therapy without exception.   If one gooogles Great Smokies Labs or Great Plains Labs, or one of the major acupuncture associations, and checks out their participating doctors lists for doctors near your zip, you can usually find a good list of alternative docs to check out.  I wanted one with an MD since he can then prescribe more things as needed.  Kate, I forgot to add, shipping by Fedex to the US is 80 Euros.

Post Edited (Probiotic) : 12/22/2010 7:17:54 AM (GMT-7)

Posted 12/22/2010 3:08 PM (GMT 0)
SAKIV46: All I know is what they say,at the start of this thread I posted one of their articles in PDF, they indicate that topical PC does not intigrate into the mucus. This may be due to a solubility problem. It is also interesting that in their patents they indicate the use of topical in emema form. So perhaps this is newer info than what is written in the patents. If it works for you then perhaps they are wrong,don't know, or they are trying to discourage people from doing their own thing and not buying the expensive stuff.
Old Mike
Posted 12/22/2010 3:24 PM (GMT 0)
That's interesting - the Frankfurt pharmacy sells suppositories as well as the granules. Probiotic did you order those?
Posted 12/22/2010 9:19 PM (GMT 0)
thanks for the info!  have any of you used the oral delayed release PC long enough to determine if it's helped your UC???  any side effects?
Posted 12/25/2010 9:16 AM (GMT 0)
Goddarn this is fascinating! Those of you who have successfully ordered and received the rPC pills from Germany, please please please post your daily/weekly results here (or somewhere on this forum and tell us the link).

I'm bleeding worse than ever the day before Christmas and this thread may be the only thing that lets me have hope for tomorrow.

The suffering has to end. I wonder if this is finally it.

As soon as I get home, I'm trying Sakiv's lecithin enemas. Will post my daily/weekly results here.

WE CAN DO THIS.
Posted 12/25/2010 8:54 PM (GMT 0)
I sent an email to [email protected] is that the email everyone used?

I remember this topic from years back and had a local compounding agency make up some PC enemas. They put them in syringe type enemas and I used them for over a month. I cannot remember the details but I stopped after I didnt see much results. I dont think I did it for as long as I should but I was trying since the slow release was only made for the study and not for sale. Thanks OLD mike for posting the current info and getting this going. Your posts always seem relevant and interesting.
Posted 12/26/2010 7:54 PM (GMT 0)
Thanks: DanthaMan: After researching UC for the past 30 or so years sometimes I can spot, what seems to be important,in the vast forest of dead ends. I think I started to follow this line of research when it was first published on pubmed 4-5 years ago,they are soooo slow. Their first patent was in 1999,boy are they slow.
Old Mike
Posted 12/26/2010 11:12 PM (GMT 0)
Old Mike: so, since you've been researching potential new treatments for three decades, what is your prelimmminary take on the PC treatment? As far as hype versus substance goes how does it compare to other studies you've seen that maybe seemed promising and fizzled?
Posted 12/27/2010 3:55 AM (GMT 0)
Levi: Lets just say,that after my son failed on IV drugs and lost his colon,I have pretty much given up on mainsteam meds to cure UC,or to even save your colon. Of course that was 10 years ago, since then some progress has been made with new drugs,mostly remicade types, or new 5-ASA delivery systems.
The retarded release PC is a fresh new approach,well not so new 1999,but it seems to me that the intact physical mucus barrier is a key to UC,from what I can tell this is not hype.
Old Mike
Posted 12/27/2010 12:26 PM (GMT 0)
I don't get this - why add bile acid when the acid gets removed in the small intestines?

http://www.drmyhill.co.uk/wiki/Ulcerative_colitis_and_phosphatidylcholine_%28PC%29_in_the_gut
Posted 12/29/2010 3:38 PM (GMT 0)
Quick update - my rPC arrived today, literally overnight from its shipment date from Germany.  The shipout got delayed by a week due to confusion (they didn't tell me the other day) regarding whether I was willing to pay what turned out to be a higher than estimated shipping cost.  Mine was 130 euros rather than the 80 euros I quoted earlier in this thread.  Anyway, I wasn't in for delivery just then and so it will be delivered tomorrow.  The bottom line is that shipping is pricey but to most of the U.S. it is overnight.

 

Posted 12/30/2010 2:29 PM (GMT 0)
So they are talking 93 euros per month in email response which I believe to be around 120-130 per month until remission dosing.

That about right ?
Posted 12/31/2010 3:53 PM (GMT 0)
I went ahead and ordered as well. Shipping is VERY high my total price including shipping to Savannah, GA was $582. Shipping was about $175 of that. I am not sure why they overnight it and next time I am going to ask for a slower shipping method. I was tracking my package and its stuck in Memphis right now because of customs. They are waiting on the German Pharmacy to send them a receipt and a FDA form. It was looking forward to having it today but it looks like I am going to have to wait. No telling how long with customs and the holiday weekend. I will keep everyone in the loop once I start taking them. BTW the pharmacy is very nice and helpful and speaks english!
Posted 12/31/2010 6:23 PM (GMT 0)
I am just wondering how we can get drugs from medsmex without all this hassle of customs and FDA forms,that seems to be necessery for the rPC. I also seems to me that they could ship it as a food, or a GRAS substance,or even a chemical with an MSDS sheet.
Old Mike
Posted 12/31/2010 9:57 PM (GMT 0)
Danthaman, Is the German pharmacy still requiring a prescription from an MD? I have made an appointment with an "alternative medicine" type MD to get a prescription, but would be great if I didn't have to go through this added hassle.

To those of you who want updates, my experience with PC enemas has been that it takes a while (3-4 weeks) for the symptoms to improve. The research studies report a similar slow action, so please don't give up on it too soon.
Posted 12/31/2010 11:01 PM (GMT 0)
Yes they require the script so it will pass through customs. Evidently either they changed something or the pharmacy didnt fill something out right. They said that this was something different so they are sending the additional form to the FDA.
Posted 1/2/2011 7:46 PM (GMT 0)
Just wanted to echo what Darthaman posted- it is approaching a week since mine was shipped out and mine too is still caught up in customs.  Somehow or another my street address got mis-spelled on fedex' label (the customs documents and invoice that were cc'd to me all had the correct address) and my package had a "delivery exception" for incorrect address and then it also turned out that it passed through Fedex' Memphis without clearing customs and was then sent back to memphis for reclearing customs...  and now I will be out of town this coming week and unable to sign for it and may have to wait a whole extra week after this fiasco.  I agree that I will try and get a cheaper, slower shipping method if I re-order it in the future.  Not sure I see why they select ovenright prioroty since it doesn't (I assume) need to be refrigerated.  Also, since Fedex seemed to bungle up at least the customs clearance process, I may seek credit for that causing several days or mroe delay, and hopefully get reimbursement from klinipharm if they get compensated, since it was supposed to be shipped overnight.

 

Posted 1/3/2011 10:36 PM (GMT 0)
Well, I tried Sakiv's lecithin enemas, and quite frankly, my colitis is too bad to hold it in right now. It's just not gonna fly.

I've taken the plunge and am trying to find a doc around here (san diego, ca) that will set me up with the right prescription.

Before I really pay hundreds of dollars for this, have any of you tried it yet? It seems a few have had their packages received. Results???

And thanks to those who have gone through the shipment process first. I will make sure not to make the same mistakes with overnight shipping, etc.
Posted 1/4/2011 2:22 PM (GMT 0)
Probiotic you can change the location of the delivery to a local fedex/kinkos place to hold. You might want to check on how long they will hold it but that is what I did because I wouldnt be able to sign for it.

I started last night and hope to see some results in the next few weeks. I will let everyone know as soon as something changes.

Thanks.
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