One of the discussions over the years has been the use of binding agents to soak up fat-soluble porphyrins dumped into the digestive tract by the liver, and keep them from getting re-absorbed on their way through the digestive tract. This not only lowers the immediate porphyria reactions, but helps over time to lower the total body load of fat-stored porphyrins. Some people with Cpn don't appear to be bothered much by porphyria and find binding agents not at all helpful, others find it life saving as porphyria is a big component of their distress from Cpn. Since some tissues like the liver and bone marrow are bigger producers of heme, it stands to reason that Cpn infections in these tissues would probably create the worst secondary porphyria. If your primary infection site is in tissues not productive of heme you will likely not have as much porphyria.
Anyway, anecdotal reports on www.cpnhelp.org are that some people find prescription cholestyramine (Questran) to be more effective than the cheaper OTC activated charcoal, while others find the charcoal to be just the ticket. There is even a pricey but flavored choco-mint powdered form of activated charcoal! I have likened this to taking choco-mint flavored xerox toner, but it is a way to get a bigger dose of charcoal without capsules.
Then I read that there is a "Super charcoal" which has double to triple the absorbtive capacity of the regular stuff, meaning that less is needed for the same effect. In trying to find out more, I came upon a page that listed a bunch of medline comparisons between cholestyramine and activated charcoal. I've copied these below and highlighted the conclusions. There may be some newer studies to add as this has not been updated in a while. It is my impression that some of these studies were done to test a specific brand of super charcoal, and so keep that in mind. The general conclusion is that the activated charcoals are as effective as cholestyramine in lowering cholesterol, and binding with Fats, and (this should generalize to porphyrins as well). It does appear that the superactivated versions are more effective at binding some of the porphyrins than regular AC's.
TI: Sorbent therapy of the porphyrias. IV. Adsorption of porphyrins by sorbents in vitro.
AU: Tishler-PV; Winston-SH
SO: Methods-Find-Exp-Clin-Pharmacol. 1985 Sep; 7(9): 485-91
AB: The adsorption capacities (Qm's) of the ion exchange resin cholestyramine and 8 activated charcoals for uroporphyrin, protoporphyrin and coproporphyrin, porphyrins that accumulate within tissues or vasculature in certain porphyrias, have been determined. Qm's (mg porphyrin/gm dry sorbent) were derived from Langmuir isotherms, which were constructed from experiments that assessed the amount of porphyrin adsorbed after the addition of varying amounts of porphyrin in solution to a constant amount of sorbent. These experiments were carried out at pH 8.2 in 0.5% desoxycholate, to simulate conditions of the small intestine. For uroporphyrin I, the Qm for Amoco Supersorb PX-21 highly activated charcoal was greater than that for cholestyramine (mean +/- SD of 26.5 +/- 12.7 vs. 17.0 +/- 2.6; t'32 = 2.46, P less than 0.025) and highly significantly greater than those of the other charcoals. For protoporphyrin IX, cholestyramine and Amoco Supersorb PX-21 charcoal had the highest Qm's (32.4 +/- 8.6 and 30.9 +/- 9.2), but these were not significantly greater than the Qm's of 5 other charcoals. Little difference was found among sorbents in the rate of adsorption of either porphyrin. For coproporphyrin III, the Qm's of cholestyramine and Amoco Supersorb PX-21 charcoal were not significantly different (39.2 +/- 13.7 vs. 35.1 +/- 4.0) but they were greater than that of Norit USP XX (20.0). Virtually no desorption of porphyrin from either cholestyramine or Amoco Supersorb PX-21 charcoal was detected. Both cholestyramine and Amoco Supersorb PX-21 charcoal appear to be highly avid sorbents for porphyrins of varied states of carboxylation.(ABSTRACT TRUNCATED AT 250 WORDS)
MESH: Adsorption-; Human-; In-Vitro; Liver-Diseases-etiology; Liver-Diseases-therapy; Porphyria-complications; Porphyrins-; Support,-U.S.-Gov't,-Non-P.H.S.
MESH: *Charcoal-therapeutic-use; *Cholestyramine-therapeutic-use; *Porphyria-therapy; *Skin-Diseases-therapy
RN: 11041-12-6; 16291-96-6
NM: Cholestyramine; Charcoal
TI TITLE: Sorbent therapy of the porphyrias. V. Adsorption of the porphyrin precursors delta-aminolevulinic acid and porphobilinogen by sorbents in vitro. AU AUTHOR(S): Winston-SH; Tishler-PV SO SOURCE (BIBLIOGRAPHIC CITATION): Methods-Find-Exp-Clin-Pharmacol. 1986 Apr; 8(4): 233-7 PY PUBLICATION YEAR: 1986 LA LANGUAGE OF
ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: SPAIN
AB ABSTRACT: The acute attacks of the acute hepatic porphyrias may be precipitated by the excessive intracellular accumulation of the porphyrin precursors delta-aminolevulinic acid (ALA) or porphobilinogen (PBG). Sorbents that bind porphyrin precursors in the gastrointestinal tract may interrupt their enterohepatic circulation, thus reducing the body burden of these materials and minimizing the frequency or severity of acute attacks. We have determined the adsorption capacities (Qm's) of several activated charcoals and the ion exchange resin cholestyramine for ALA and PBG. Qm's (mg ALA or PBG adsorbed/gm dry sorbent) were determined from Langmuir isotherms, which were derived from studies of the amount of porphyrin precursor adsorbed after the addition of a constant amount of ALA or PBG to varying amounts of sorbent. These experiments were carried out pH 8.2 in 0.1% desoxycholate, to simulate conditions of the small intestine. Extremely high Qm's were obtained for all charcoals and both porphyrin precursors; those for cholestyramine were one or several orders of magnitude lower. For ALA, the Qm of Gulf Bio-Systems Super Char charcoal (110 +/- 35 [SD]) was not significantly greater than that of Med-Corp Acta-Char charcoal (95 +/- 20), but it did exceed those of all other charcoals by a statistically significant amount. For PBG, the Qm of Super Char (68 +/- 14) was marginally greater than that of Mallinckrodt USP charcoal (42 +/- 21, t8 = 2.18, p approximately equal to 0.06), but it was significantly greater than that of Acta-Char charcoal (27 +/- 12). All sorbents adsorbed ALA or PBG at comparable rates, and the complex of sorbent and porphyrin precursor appeared to be undissociable.(ABSTRACT TRUNCATED AT 250 WORDS) MESH MEDICAL SUBJECT HEADINGS: Adsorption-; Kinetics-; Support,-U.S.-Gov't,-Non-P.H.S. MESH MEDICAL SUBJECT
HEADINGS: *Aminolevulinic-Acid; *Charcoal-; *Cholestyramine-; *Levulinic-Acids; *Porphobilinogen- RN CAS REGISTRY NUMBER OR EC
NUMBER: 106-60-5; 11041-12-6; 16291-96-6; 487-90-1
NM NAME OF SUBSTANCE: Aminolevulinic-Acid; Cholestyramine; Charcoal; Porphobilinogen ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0379-0355 AN MEDLINE ACCESSION NUMBER: 86255821 UD UPDATE CODE: 8610
TI TITLE: Correlative studies of the hypocholesterolemic effect of a highly activated charcoal. AU AUTHOR(S): Tishler-PV; Winston-SH; Bell-SM AD ADDRESS OF AUTHOR: Brockton/West Roxbury Veterans Administration Medical Center, MA. SO SOURCE (BIBLIOGRAPHIC
CITATION): Methods-Find-Exp-Clin-Pharmacol. 1987 Dec; 9(12): 799-806 PY PUBLICATION YEAR: 1987 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: SPAIN AB ABSTRACT: We have carried out in vitro and animal studies to determine the cholesterol lowering efficacy of activated charcoals vs. cholestyramine. In the in vitro studies, we determined the adsorption capacity (Qm) of cholestyramine and activated charcoals for cholesterol in glacial acetic acid. Mean (+/- SD) Qm's (mg cholesterol adsorbed/gm dry sorbent) decreased in the order Super Char highly activated charcoal (277 +/- 121), Norit USP XX charcoal (33 +/- 10), Acta-Char charcoal (26 +/- 4), Mallinckrodt USP charcoal (26 +/- 10), Norit A charcoal (22 +/- 4) and cholestyramine (0). For the bile salt sodium desoxycholate in ammonia: sodium bicarbonate, pH 8.2, the Qm with cholestyramine was 4641 +/- 2669 and with Super Char was 2814 +/- 667 (p = 0.11). We then contrasted the effect of cholestyramine (1%, added to the diet) and Super Char (1% or 2%) on plasma cholesterol concentrations in rabbits made hypercholesterolemic with a diet containing casein. The percent reductions were 61 in one rabbit fed chole styramine, 61 and 67 in two rabbits fed 1% Super Char, and 90 in one rabbit fed 2% Super Char. In WHHL homozygous rabbits, reductions in plasma cholesterol from pre-treatment and post-treatment levels, respectively, averaged 52% and 38% with 2% cholestyramine (2 animals), 70% and 43% with 2% Super Char (2 animals), and 70% and 63% with 4% Super Char (3 animals). The effectiveness of cholestyramine in animals that lack functional cellular receptors for low density lipoprotein was unexpected. Super Char charcoal appears to be an effective hypocholesterolemic agent, warranting study in man. MESH MEDICAL SUBJECT HEADINGS: Animal-; Cholestyramine-therapeutic-use; Comparative-Study; Deoxycholic-Acid-pharmacology; In-Vitro; Rabbits-; Support,-U.S.-Gov't,-Non-P.H.S. MESH MEDICAL SUBJECT HEADINGS: *Anticholesteremic-Agents-therapeutic-use;
RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 83-44-3 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Deoxycholic-Acid ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0379-0355 AN MEDLINE ACCESSION NUMBER: 88156426 UD UPDATE CODE: 8806
TI TITLE: Superactivated charcoal versus cholestyramine for cholesterol lowering: a randomized cross-over trial. AUTHOR(S): Park-GD; Spector-R; Kitt-TM AD ADDRESS OF AUTHOR: Department of Internal Medicine, College of Medicine, University of Iowa, Iowa City. SO SOURCE (BIBLIOGRAPHIC CITATION): J-Clin-Pharmacol. 1988 May; 28(5): 416-9 ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0091-2700 PY PUBLICATION YEAR: 1988 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: UNITED-STATES AB ABSTRACT: To evaluate the relative abilities of superactivated charcoal (20 g twice daily) and cholestyramine (8 g twice daily) to lower plasma cholesterol concentrations acutely, six hypercholesterolemic patients were studied using a randomized cross-over design. After a 1-week dietary control period, each subject received 3 weeks of each treatment regimen on separate occasions. Superactivated charcoal and cholestyramine reduced total plasma cholesterol by 21.8 +/- 3.8% and 16.2 +/- 2.4%, respectively. Side effects were mild and similar for both treatments. At the dosage regimens studied, superactivated charcoal and cholestyramine have comparable ability to lower plasma cholesterol concentrations. MESH MEDICAL SUBJECT HEADINGS: Adult-; Charcoal-adverse-effects; Cholestyramine-adverse-effects; Clinical-Trials; Diet-; Female-; Human-; Male-; Middle-Age; Random-Allocation; Support,-Non-U.S.-Gov't; Support,-U.S.-Gov't,-P.H.S.; Time-Factors; Triglycerides-blood MESH MEDICAL SUBJECT HEADINGS: *Anticholesteremic-Agents; *Charcoal-pharmacology; *Cholesterol-blood; *Cholestyramine-pharmacology PT PUBLICATION TYPE: CLINICAL-TRIAL CN CONTRACT OR GRANT NUMBERS: RR59 RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 57-88-5 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Cholesterol AN MEDLINE ACCESSION NUMBER:88273727 UD UPDATE CODE: 8810
TI TITLE: Activated charcoal in the treatment of hypercholesterolaemia: dose-response relationships and comparison with cholestyramine. AU AUTHOR(S): Neuvonen-PJ; Kuusisto-P; Vapaatalo-H; Manninen-V AD ADDRESS OF AUTHOR: Department of Clinical Pharmacology, University of Helsinki, Finland. SO SOURCE (BIBLIOGRAPHIC CITATION): Eur-J-Clin-Pharmacol. 1989; 37(3): 225-30 ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0031-6970 PY PUBLICATION YEAR: 1989 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF
AB ABSTRACT: The dose-response relationship of activated charcoal in reducing serum cholesterol was determined and the effects of charcoal and cholestyramine were compared in patients with hypercholesterolaemia. In a cross-over study 7 patients ingested charcoal 4, 8, 16 or 32 g/day, and finally bran, each phase lasting for 3 weeks. Serum total and LDL-cholesterol were decreased (maximum 29% and 41%, respectively) and the ratio of HDL/LDL-cholesterol was increased (maximum 121%) by charcoal in a dose dependent manner. Ten further patients with severe hypercholesterolaemia ingested daily for 3 weeks, in random order, activated charcoal 16 g, cholestyramine 16 g, activated charcoal 8 g + cholestyramine 8 g, or bran. The concentrations of total and LDL-cholesterol were reduced by charcoal (23% and 29%, respectively), cholestyramine (31% and 39%) and their combination (30% and 38%). The ratio of HDL/LDL-cholesterol was increased from 0.13 to 0.23 by charcoal, to 0.29 by cholestyramine, and to 0.25 by their combination. Serum triglycerides were increased by cholestyramine but not by charcoal. Other parameters, including the serum concentrations of vitamin A, E and 25(OH)D3 remained unaffected. The changes in lipids only partly subsided during the 3-week bran phase. In general, the acceptability by the patients and the efficacy of activated charcoal, cholestyramine and their combination were about equal, but there were individual preferences for particular treatments. MESH MEDICAL SUBJECT HEADINGS: Adult-; Cholesterol-blood; Comparative-Study; Dose-Response-Relationship,-Drug; Drug-Therapy,-Combination; Female-; Human-; Hypercholesterolemia,-Familial-blood;
Lipoproteins,-LDL-Cholesterol-blood; Male-; Middle-Age; Support,-Non-U.S.-Gov't; Triglycerides-blood MESH MEDICAL SUBJECT
HEADINGS: *Charcoal-therapeutic-use; *Cholestyramine-therapeutic-use; *Hypercholesterolemia,-Familial-drug-therapy
RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 57-88-5 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Cholesterol AN MEDLINE ACCESSION NUMBER:
So far, the only super charcoal sources I've seen are for fish tank filters and for soaking up household or chemical spills. If anyone finds pharmaceutical grade versions, please post. I'll enable comments on this even though it's a handbook page.