interesting info from my doctor

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poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 2/26/2008 11:09 AM (GMT -6)   
I received this e-mail from my doctor as mass general hospital in Boston, MA.  I though I would share the information because I am going to look into it.  Anyone heard of this before??
 
 
I also wanted to alert you to something you could do that might be helpful AND has no toxicity.   There is recent interest in a compound called "Phosphatidyl choline".  This is an important component of cell membranes and of the mucus that covers the colon.   In health food stores, they often sell "Lecithin" which is made up of phosphatidylcholine and some other compounds.  If you check on line, there are numerous web sites that sell phosphatidylcholine - but they vary in the purity of the compound.  Many of them sell compounds that contain 30-35% phosphatidylcholine, others sell a more pure (90%) compound.  It now is a common supplement taken by people for all kinds of things. 
    Recently, an important article was published in the Annals of Internal Medicine (2007; 147:603-610).  This study looked at patients with ulcerative colitis who could not be tapered off steroids.  The patients were randomized to take phosphatidylcholine 2 grams per day or placebo.  After 12 weeks, 80% of the patients given phosphatidylcholine were off steroids compared with only 10 % of patients given placebo.
     You might consider taking this as a vitamin supplement.  There are no downsides - it is extremely safe. There are many websites that sell it.  But, one site that sells pure PC is www.phoschol.com.  On that site, the pills contain 900 mg of pure phosphatidylcholine, so you would take 2-3 pills per day.
    Of note, in the article in the Annals, the phosphatidylcholine was given in a special capsule that released the chemical in the colon (rather than the small intestine where it can be absorbed).  However, if this supplement works, we don't really know whether it is necessary to give it in that manner.  (None of the sites make it that way at present.)

~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Prednisone (40mg when flaring)
-Klonopin 1.5mg/day

 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4411
   Posted 2/26/2008 1:10 PM (GMT -6)   
Thanks for sharing. I will definitely look into this. Nice of your doctor to send you that. I wonder if it helps with mild symptoms as well.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/26/2008 1:37 PM (GMT -6)   

Hi Kristyn,

That is good info, i'm on pred now for the first time (for my kidneys and uc), I hope I can taper off and will definintely keep this in mind.  Please keep us posted.

btw, who are you seeing at MA General? My friends dad goes there and just finished a Humira study for UC, I think he was on the placebo but now is on regular Humira and is doing really well.

Also, I plan to go to there at some point for a second opinion for drug treatments.

 

 


Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 2/26/2008 1:52 PM (GMT -6)   
Hi. The study was done about a year ago. Phosphatidylcholine is only beneficial for UC if it has a 'retarded release'. I took phosphatidylcholine for 2 months after this study but I had got no benefits because I could not purchase the 'slow release' anywhere. 
 
 

Post Edited (mudua) : 2/26/2008 11:56:39 AM (GMT-7)


Rio in Maryland
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Date Joined Nov 2007
Total Posts : 891
   Posted 2/26/2008 2:04 PM (GMT -6)   
I emailed the manufacturer of PhosChol to get feedback on whether their product would be beneficial for treating UC and got the following reply:
 
To the best of our knowledge there have been a couple published papers using enteric PC capsules for colitis (one of which is attached). However, he uses a PC of low purification grade (with 30% PC only!) while the main components of phospholipids in mucus are phosphatidylcholine and lysophosphatidylcholine with up to 90%! Therefore, it's advisable to
administer PC as pure as possible. Furthermore, there are no data showing that you get more PC with that poorly purified released material to the colon than with pure PC (PhosChol). Even if most of the pure PC is absorbed in the upper GI-tract, a significant part remains for the lower part. At least, first publications with pure PC have shown a positive effect on
ulcerative colitis, too. And, two of these publications are even mentioned in the reference list of Stremmel's paper (nos. 16 and 17).

I mention all of the above regarding a purified preparation of PPC as we believe that there is no commercially available enteric coated capsule. Our understanding is that the product used in this study was provided especially for this study and that the authors and or partners of the authors are considering a use or product patent application for treating colitis with a slow release capsule. We have no additional information as to when or by whom such a capsule will be made available to the market.
We strongly suggest that you use PhosChol, Phosphaline (distributed by Xymogen) or Hepato Pro (distributed by Life Extension). Only these three products are 100 percent purified PPC and capable of delivering a therapeutic dose of 1,2 dilinoleoylphosphatidylcholine (DLPC). For this reason, any other non-purified phosphatidylcholine or triple strength
lecithin product is not recommended for acute or chronic conditions.
Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 2/26/2008 2:08 PM (GMT -6)   
lots of good feedback.

I am seeing Dr. Kenneth McQuaid, but he is only there for another month or so and then I will be seeing one of the other two directors of the colitis center.

I figure at this point i can give it a try...i have had horrible reactions to remicade, humira, 6mp and at this point am only taking asacol (crossing my fingers that i don't flare!)
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Prednisone (40mg when flaring)
-Klonopin 1.5mg/day

 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4411
   Posted 2/26/2008 6:23 PM (GMT -6)   
Has anyone tried this? I am really interested in trying it. It is sort of pricy though if we need to take 2-3 pills/day. poohbear- let us know how it turns out if you try it.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 2/26/2008 7:37 PM (GMT -6)   
I think Sara's initial point is a good one: does this work with a more mild UC or only when needing steriods (I take it, a fairly severe flare)?  Steriods only seemed to help me when in a severe state and I wonder if phosphatidylcholine is the same.

Pancolitis '04
Yet to ever go into remission: maintaining at the moment
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Borage Oil, Iron, Oregano Oil


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 2/26/2008 8:33 PM (GMT -6)   
just speaking for myself....i am not currently in a flare and I am hoping NOT to have to go back on steroids. This was the mind frame of the person my doctor was sending this information too, so i would assume it might have some preventative usage, otherwise it would not be relevent to my current state, which he knows about.
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Prednisone (40mg when flaring)
-Klonopin 1.5mg/day

 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 2/26/2008 10:45 PM (GMT -6)   
I live in Massachusetts too.  I used to see a doctor at Beth Israel, but now see a doctor closer to home (south shore area).  That does sound interesting, maybe we will hear alot more about it soon. yeah
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission
 
asacol 400 mg 3 tabs 3x a day, didn't work
was on prednisone, doc took me off.  Asacol didn't help.
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid,mesalamine enema every other night, Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....


AshNH
Regular Member


Date Joined Jul 2007
Total Posts : 208
   Posted 2/27/2008 12:51 PM (GMT -6)   
hi Kristyn, I also goto Mass General. I see Dr. Bruce Sands. If you want more info about him, feel free to email me offline. nh_single_male on yahoo.
Ash 39 NH, vegetarian
Current meds: Asacol 12/day, Imuran 150mg
L-glutamine, Coconut Water, Rowasa(as needed)


DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 2/27/2008 1:10 PM (GMT -6)   
Not to be negative here but I tried this about a year ago. I used teh Phoscol, 3 bottles worth and it unfortunatley didnt work. I even had a compounding pharmacy make PC enemas, and that didnt work eiher. The reason you need the retarded release it for it slow release over a longer tract of the GI. I got that same email from phoschol, they are also not going to say that their product doesnt work!

I am not saying dont try it because everyone is different, however I tried two different ways of taking this and neither worked. I was in a flare at the time, maybe this is like psyllium and only effective once you are in remission for keeping you there.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/27/2008 3:35 PM (GMT -6)   
Wow. Kudos to your doctor on providing treatment information deviating from the usual "standard of care." open-minded GIs with an eye for complementary medicine practices are few and far between, in my experience.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

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