Psoriasis Hall of PShame
This is a critical review of psoriasis treatments promoted on the net. Many of these are scams. Some are just deceptive misinformation, others are potentially dangerous. Secrets are revealed wherever possible to spoil the marketing game. It's a shame that these hucksters prey on people desperately looking for a safe and effective treatment.
Skip to: FDA Steroids Skin-Cap SkinZinc Miralex Exorex Zinc Miracure Kessler Psoriasis.COM Lupicare Itchstopper Psorigon Emu Oil Neem Oil Ewell CureBook GilTeva Amjo D.P.Ray silver PsoriasiCure feedback
Why is this page needed?
Quackery is everywhere. With a few notable exceptions, commercial sites selling psoriasis treatments emphasize only the claimed benefits of their products and provide no support for those claims. They rarely mention risks, side effects, or offer an accurate list of ingredients so that consumers can make their own informed choice. The only public place to find this information has been in the psoriasis newsgroup, and the postings don't stay around long enough for newcomers to see them. By putting this information here on the web, the reviews will hopefully be as visible to the world as the commercial sites are now.
One universal trait of the Hall of Pshame sites is that they raise unrealistic hopes of miracle cures and rapid clearing. Most psoriatics have become hardened to these tactics, but sometimes the sales pitch can be very convincing. "What have you got to lose?" is a common question. The fact is, that besides the money lost, the time wasted on an ineffective treatment could have been used to try something more realistic. The greatest loss is when a desperate person gets fooled again, and loses hope of ever finding something that works.
Please distinguish between the treatments being offered and the methods used to promote them. The intent here is not to invalidate anyone's personal success with a treatment, but to show how the claims are deceptive and misleading. The promoters of the secret cures no doubt got benefit with their regimen, but it is a serious mistake to assume that their experience will be universal. Psoriasis covers a wide range of symptoms that can be triggered by many different causes. What has been discovered repeatedly in the open forum discussions is this: What works for one person does nothing for the next.
If you have a web site related to psoriasis, please consider linking to this page. If you see a search engine that allows submissions, please do. You could save someone a lot of grief.
Many products are advertised as "natural remedies", or nutritional and dietary supplements. The US laws enforced by the Food and Drug Administration have strict definitions of what constitutes a drug. Briefly, that's anything that is registered as a USP drug, acts like a drug, or is claimed to act like a drug. Most of the Over The Counter (OTC) drugs are generally recognized as safe, and have been tested by companies that follow the FDA guidelines. Since a 1990 OTC ingredients ban however, only coal tar and salicylic acid may be legally claimed to have a benefit for the treatment of psoriasis. Any products that are sold OTC that make claims for treating psoriasis, are considered drugs or medical devices by the FDA. If an unlawful product is particularly dangerous or widespread, it will get the attention of the FDA and the manufacturer will be warned. With the Adobe Acrobat plugin, you can view a typical warning letter sent to the manufacturer of Everclean Psoriasis Cream and Psoriasil. In a nutshell, nutritional supplements may be marketed, but the wording must not make any claims of treatment for psoriasis. See the current US code and federal regulations regarding psoriasis.
Until our governments can allocate the resources to investigate and constrain these scam operations, please BOYCOTT such misleading products. Don't even respond to Unsolicited Commercial Email except to voice your protest to the owner about their marketing tactics. A formal complaint to the Internet Service Provider might be even more effective. If you think the health regulations are already too strict, consider that most of those laws came about because another scammer pushed the limits and someone got hurt. One solution to the reckless promotional claims would be to require an accurate list of ingredients not only on packaging, but also in any promotional material for mail order sales. Advertisers need to make available, for presale evaluation, the same information that is required on the label. This is already happening for prescription products. It's time to include OTC drugs, cosmetics, and nutritional supplements, too. We have a right to make informed choices about our own health.
Recently, FDA CDER headquarters has declared a new policy. The FDA will not investigate claims related to internet promotion. They suggest contacting one of their field offices, or possibly the FTC. They will only respond to problems related to the actual product label. They further do not wish to have their contact information published. This is a very disappointing turn of events.
June 2001 update: The FDA has sent some warning letters as part of a publicized Cyber Letters campaign, but most of the effort comes from their field offices. Many scams still persist because the FDA has not allocated enough resources toward enfocement but they have published an email contact address for reporting fraudulent activity: OTCfraud@CDER.FDA.gov
In recent years, topical corticosteroids have become a standard treatment for many skin diseases. Their use is so widespread that many general practitioners will prescribe a steroid rather than make a complete diagnosis. With most self limiting skin conditions, the symptoms disappear from the steroid, the condition resolves on its own, and the patient is happy with the treatment. Problems can arise if the steroids mask the irritation while the condition worsens. In such a case, many doctors will simply prescribe something stronger. Psoriasis, being a chronic condition, usually requires maintenance treatment to keep it under control.
One of the major problems with steroids is called tachyphylaxis, the decreasing effect of the treatment with continual use, requiring ever stronger doses. High dosage can lead to a serious rebound flare if the treatment is stopped abruptly, perhaps when changing treatments. The rebound effect is not just a return of the symptoms, but often a body wide reaction, sometimes much worse than the previous condition. All dermatologists are well aware of these problems, which are even more acute in children. They will generally recommend a pulse therapy, which includes resting periods or rotating between other nonsteroidal treatments. This can help prevent some of the other side effects of steroids, such as thinning of the skin, causing striae or stretch marks, a tendency to bruise easily, and if absorbed systemically, possibly hormonal disruption, osteoporosis, and even psychosis. If they get into the eyes in even small quantities, they can lead to cataracts and glaucoma. Do not depend on a doctor to alert you to these problems. For whatever reasons, they may not think it is necessary. It is best to get informed about any medication you take, but be sure to ask your doctor about any side effects. Over The Counter (OTC) cortisones are mild compared to prescription products, but they still need to be used with caution.
A disturbing trend in the last few years is for unscrupulous marketeers to include potent steroids in their otherwise nondescript skin products, without any indication or warning on the label. People try the product and are amazed by the sudden remission. They may not realize that they can become dependent on it, and that it can be dangerous to suddenly stop. The euphoria of having clear skin can override any rational decisions about benefit vs risk. Word can spread rapidly from personal testimonials over the net. In many cases, even these turn out to be a fraud.
The most notorious product example is Skin-Cap. Psorigon followed shortly after. A product called Psorial supposedly containing Dead Sea extracts was banned in Sweden in 1998, and a UK analysis of Chinese Herbal creams found that more than half of the various samples contained potent steroids. Miralex (with offices and marketing in the USA) has also been tested in Canada and found to contain clobetasol propionate. (Note that in any of these cases, the FDA has only conducted tests after hearing of reports from other countries.)
Even after these fraudulent products have been identified and banned in many countries, copycat "clone" makers try to pick up the market share of people desperately seeking a substitute. There are several competing Skin-Cap clones which compound an ineffective zinc pyrithione solution with a prescription strength steroid. Most of the dealers provide their own "click and print" prescription forms, and attempt to identify themselves as the equivalent of the "miracle" or "magical" banned product. They claim the impressive benefits of superpotent steroids, with little or no warning of the side effects. Even worse are the marketers who claim all the benefits without any steroids or side effects.
Skin-Cap BlueCap, etc...This massive scam warrants its own Skin-Cap FAQ web page. Note that as of the 1997 drug modernization act, it is illegal for US pharmacies to promote the compounding of any particular drug, class or type of drug. They may only advertise their compounding capability. Any pharmacy that dispenses compounded medications for third party resale is operating outside of their pharmacy associations' code of ethics.
Since 1999, there have been various telemarketing campaigns of newspaper and radio ads for topical zinc pyrithione products such as SkinZinc, Acadia Skin Care, Skin-Plaque and others. In 1990, the FDA specifically banned the promotion of zinc pyrithione products for psoriasis treatment. Recent clinical trials of such products have found them generally ineffective for psoriasis. There are a few public reports of people having success with a topical zinc pyrithione shampoo (such as Head & Shoulders) on the skin, but that's not a typical response. Generic dandruff shampoos have about ten times the concentration of active ingredient compared to the overhyped "Zinc" sprays. See the Skin-Cap FAQ for more details and reports.
This product claims to be a herbal cream, but there is no list of ingredients on the label, and the distributors have responded that the formula is a closely guarded secret. Given the claims and testimonials of rapid clearing, and the emphasis on the web site about the problems of steroid rebound, this product should be treated as if it contains a potent steroid. What is most disconcerting is that the promoters recommend it for use on infants, claiming that they used it on their own grandson. An early report is that the product was manufactured in Israel. The distributor now claims it comes from eastern Europe. Please check the archives for updates.
Dec 1999 update: On Nov 18, Health Canada posted a consumer warning after finding the superpotent steroid "clobetasol propionate" in Miralex. The US FDA was advised of the Miralex labeling and claims problems several times in early 1999, but stated unoffically that they did not have the resources to investigate unless (until) someone suffered an injury. The Miralex web site has no warnings of the problem, yet the operators are still taking orders, and have said they are preparing another batch.
May 2000 update: See PsorSite for another perspective on Miralex. There are still no public warnings at the manufacturer's web site, only the same claims about working "naturally". In February, a Vancouver law firm filed a class action suit against Miralex on behalf of all Canadian purchasers. They seek to recover all sums paid, plus damages for any personal injuries.
Feb 2001 update: On Feb 6, the Canadian courts certified the class action suit. Residents of British Columbia are automatically included. All others interested in joining the suit need to contact the managing law firm. They have provided this Notice of Class Action Involving Miralex Cream. The main page of the Miralex site still has no warnings, but product info, order forms, and shopping carts have remained operational despite the legal action.
Exorex by Bioglan aka Meyer-Zall Linotar imxn.com exorex.com exorexusa.com psoriasisfree.com
This product is not based on bananas, despite the misleading advertising impressions. It is emulsified coal tar in organic solvents. The only known patent by the inventor explains the ingredients, with an emphasis on nitrous oxide (laughing gas). Some of the promoters of Exorex in the support group have included Dr Dan Lobovits aka Ira Lewis, Dr Michael Brooks, and Stephen Karten. There have been hundreds of posts discussing Exorex. Most of them are controversial due to the company's marketing tactics. There are many alternative coal tar products on the market at a fraction of the price. For all their claims, IMX has presented no evidence that Exorex is more effective than tar treatments that have been in use for years.
The company makes misleading claims that exaggerate their statistics. As a publicly traded company, it would be expected that the medical claims should be as credible as any financial statement. Because they started as the first major company selling only psoriasis products, they might be seen as setting the standard for this market. Providing accurate information for making a treatment decision, such as online product ingredient lists, should come before testimonials and manipulated before/after photos.
IMX claims to have a highly penetrating delivery mechanism. This could very well alter the risk from standard coal tar. The carcinogenic effects of coal tar are not mentioned at all. The FDA has a monograph approval, which was based on decades old safety studies in the traditional petrolatum base. Still, the FDA recommends warning labels for coal tar products. While the safety of standard coal tar is still controversial in medical circles, IMX has offered no evidence of safety testing for this "enhanced" penetration. For more information see this recent report on the carcinogenicity of coal tar (Acrobat Reader required).
There were rumors of a formula change, and some former customers say that the product lost its effectiveness for them. The company now markets Exorex with similar claims for eczema. They have promoted the product on TV talk shows, causing public confusion between psoriasis and eczema. IMX still advertises rebate coupons, but the fine print says that the offer has expired.
When Exorex was recently rolled out in the UK, the BBC vectored the full banana and zulu myth, with pictures. Exorex is now listed among products by Medicis, so the marketing tactics may soon change. If you are a dedicated customer, consider taking up these issues with them, so that others might be able to fairly estimate the risk/benefit/cost involved.
IMX has a new product line called mother2be that targets pregnant women. Their products include what appears to be cow colostrum as an anitinflammatory. Their trademark (lactoferrinate) doesn't match the marketed ingredient (lactoferrenate). Neither are recognized supplements. Natural lactoferrin production drops during pregnancy, presumably to help prevent rejection of the fetus. Adding bovine immune hormones during pregnancy isn't even recommended by colostrum advocates. Colostrum may have its benefits, but targeting a mother2be might not be best for her baby. One must wonder if the company put the same effort into researching the safety of the product that they spent on marketing accuracy.
Jan 2001 update: - An 8 week double blinded right/left trial has been conducted of Exorex vs Exorex without the fatty acid component. The averaged improvement in PASI score of 53.9% showed that Exorex was less effective than the 56.1% result of the coal tar control.
- After IMX sold off Exorex, they shifted into the Multi-Level-Marketing business. Unfortunately for some 20,000 "downliners", IMX filed for bankruptcy in November 2000. More details are in the SEC's archive of IMX filings. Exorex is still being promoted agressively in the UK where there are attempts to get it listed as an EU prescription drug so that it may qualify for sickfund reimbursement.
The Zinc Pill Scam (see the Skin-Cap FAQ for info on topical zinc products)
"Psoriasis - Clear it up Now!!"
This is an attempt by Ross Gambril at www.marga.com to sell booklets at $9.45 each. He makes claims about genetic research discoveries and cures. What he so secretly touts is large doses of oral zinc supplements, on the order of 1 mg/lb of body weight, or about 150 mg for a typical adult. It is the consensus of the online newsgroup that few people benefit from this treatment. Several clinical trials have been conducted on the use of oral zinc sulfate as recently as 1994. Most double blind trials show no benefit at all. A 1969 analysis of zinc and psoriasis states, "In any case, treatment with zinc sulfate orally did not help despite a rise in serum and scale zinc concentrations." Similar studies in 1958 noted that zinc therapy failed. There is no significant difference in zinc levels between psoriatics and the rest of the population.
The worst part of this scam is that his company, Psoriasis Solutions, sends out unsolicited commercial email (UCE) spams with forged headers. Ross started with a firstname.lastname@example.org website, but apparently was booted for spamming within AOL. He has recently expanded his market to eczema sufferers and even victims of herpes. Ross claims repeatedly that his motivation is to help everyone with psoriasis, yet he must charge a fee to recoup his costs of mailing. Surely he could just say "try zinc" at his web site and save all the secured credit card ordering overhead.
Zinc supplements have been getting a lot of press. They are relatively safe, but are known to disturb the metabolism of other trace minerals, such as copper. Experiment if you like, but please be aware of possible side effects. Gambril recommends one of the more bioavailable forms rather than zinc sulfate.
Another company, "J & S Solutions" has sent out UCE using the exact same "genetic research discovery" hype, but charging $20 per booklet. It seems the scam is more effective than the treatment. They don't have a web site or valid email address. They simply ask everyone to send cash or money order to their address.
Yet another persistent attempt to use this scam appeared in the support groups. See the PsorSite review of Darryl Eteson's DeluxLife claims for more details.
Kessler's Nystatin Scam "Psoriasis Cure, Remission, ..."
This scam is by Ken Kessler at www.psoriasis-remission.com and other duplicate web sites. He is attempting to sell a packet of information for $19.95. His "secret" is the use of topical nystatin, a prescription antifungal which must be obtained from your own doctor. While Ken may have gotten some benefit, this is certainly no cure. The treatment has been around for many years, although it is usually taken orally to clear yeast from the gut. Ken claims he discovered it in 1987, and he is being ripped off by anyone who recommends it. The fact is, it was reported as an effective treatment in popular book, "The Yeast Connection" by William Crook when it came out in 1983. Ken said he never heard of the book. It cites research by a prominent researcher, Dr Rosenberg, who has worked with others to explore the effect of various microorganisms on the disease. Ken claims to have developed the treatment, and takes credit for Rosenberg's research, yet it was in use for years before Ken was even diagnosed. What Ken sends out is apparently selected photocopies of Rosenberg's journal reports (freely available at a med library) and copies of Ken's personal medical history.
Kessler has used the name of the National Psoriasis Foundation prominently on his web sites, despite requests from the NPF to cease. On one page, it was the in the title, first line of text, and he used it over 50 more times in an attempt to improve his ranking with the search engines. At the bottom, he adds a small disclaimer that he is not affiliated with the NPF. Several sites have been deceived into linking to Ken's site instead of the NPF. In particular, the disabilities page at About.com not only confused the two, but repeated Kesslers' bogus information as fact. Kessler refused repeated requests from both the NPF and Boeing that he stop using their names in his promotions, causing the confusion to persist. Excite.com gives the top "psoriasis associations" link to the NPF, but it actually goes to Kessler's site. It has been that way for ages, despite complaints.
Kessler makes claims about having a release of invention from Boeing McDonnell in St. Louis, where he implies that he developed it. It appears he merely visited their library.
In response to the many folks who are upset by his deceptions, he promised to reveal on the web site that the treatment is actually topical nystatin. His method is to mix it with petrolatum (Vaseline) and spread it on his knuckles. He then wears plastic gloves overnight, repeating this for three or four days. He says he has also used this method on his legs.
He has pilfered medical descriptions of several immune disorders to make his hype sound well researched, and then goes on to equate psoriasis with cancer. He talks of organ specific diseases, yet never mentions that his treatment is only a topical antifungal. Foot spray or jock itch cream are topical antifungals of similar potency. Topical nystatin is most well known as a prescription for diaper rash. A common name is mycostatin.
Please see the public archive for Kessler's threat of retaliatory legal action against this review. He has been publicly abusive, and even asked that a sample of his threats be posted here. No problem. His personal accusations of "freeloading" should be seen in light of his many duplicate scam sites posted wherever he could find a free link or web page. Kessler initially contacted this site requesting a free advertising link. Kessler's other scams include booklets with such titles as "Lotteries Are Not Random". He also claims to have various trademarks such as "Real Numbers", which aren't listed in the USPTO database.
5/99 update. Kessler's site has been updated with some especially disconcerting photos of something that doesn't look like scalp psoriasis. He has added testimonials to his main page from people claiming overnight cures for scalp psoriasis. This is unheard of, casting doubt that the condtion being treated is actually psoriasis. An author of a testimonial on Kessler's page is now promoting his site in the newsgroups, and has also emailed private threats very similar to Kessler's.
Amazingly enough, Kessler has actually been awarded a utility patent on April 27 for "Psoriasis medication and application for remission and/or cure of plaque psoriasis". It is astounding that the filing was accepted given the prior use of Nystatin for decades. Note that obtaining a patent is not proof of validity. The patent filing places it in the public domain, allowing anyone to freely reprint the method in his patent (Acrobat viewer rquired.)
This is effectively the opposite of a trade secret. The purpose of a patent is to exclude all others from manufacturing or even using the method. The broad claims in his patent, which include the use of Nystatin in any delivery mechanism for any skin disorder, ensure that the patent will certainly be challenged should Kessler attempt to enforce it. Here's a telling quote from his web site: "I am currently interested in making contact with Pharmaceutical Companies for the sell [sic] and disposition of this UNITED STATES PATENT." It is obvious that this is purely a marketing ploy, since Kessler manufactures nothing. It is a ludicrous notion that Kessler has any rights to exclude others from selling or experimenting with Nystatin.
Although Boeing is mentioned twice in the patent, it is apparent that their only involvement was that they allowed Kessler the use of their library. The misinformation in the patent itself is a shame, since it has become part of the public record and will undoubtedly be referred to by future patents. For example, Kessler repeats his claim that "Postural psoriasis has small pustules spread over the body". There is no such form, and it has nothing to do with posture. The correct term is Pustular, and it generally affects the palms and soles of the feet. Part of an accurate differential diagnosis is determining that the pustules are sterile. Topical antifungal treatments of all sorts have been tried, and are generally ineffective.
Oh yeah, Kessler has found that he can get $20 instead of $15 from anyone desperate enough to buy his story.
May 2000 update: The price for the email "report", jumped to $40, and now $50. The global newsgroup was disrupted for months by a barrage of angry attacks from RickYeager, a proponent of prescription antifungals who testifies at Ken's sites. Ken Kessler's pages now create such a strong appearance of endorsement from Dr Crook, that many people now assume that the site is actually operated by the doctor himself, and have protested the lack of ethics. A 900 number has been added to the site, charging $3/minute for "Doctor William G. Crook Comments".
Nov 2000: The price has now jumped to an incredible $150.
Apr 2001: Legal pressure has caused Kessler to withdraw from using the NPF trademark in his titles, but he still hasn't removed all the offending sites. He is now been infringing on the copyright of this page by creating mangled copies of the Hall of Phame which he then links and feeds to various search engines. He uses throwaway accounts, so it's like whack-a-mole; when one page gets killed off by the copyright team, he just cranks out another one anonymously. That's willful infringement, which carries a hefty (up to $100k) federal fine. He's also been sending more nastygrams, garnering an expanded Psorsite review.
Fumaric Acid Esters
The use of Fumaric Acid Esters for the treatment of psoriasis requires close monitoring by a physician because of potential toxic effects on the liver and kidneys. It has been used in clinical European trials, but it has not been approved in the USA. Jeremy Southern, Kevin Southern, and Jessie Dawson, are attempting to sell this substance by mail order without any prescription or even warnings about its use other than possible upset stomach. When last checked, the site had been taken off-line, but they (he?) was still promoting the product in the support group and by email. Please see the warnings about the use of this product in the newsgroup. Beware, this is a potentially dangerous product.
November 98 update:
Jeremy Southern has threatened to bring legal proceedings regarding the previous paragraph, written last June. Since then, a weak warning was added in fine print to one of his many pages. His site was only down for the time it took to setup shop with a new ISP. The Miracure domain is registered in BC, Canada, but the web server is now located in Florida, with credit card ordering and prices presumed to be in US Dollars. He repeatedly claims that his product is an FDA approved nutritional supplement. The FDA says that Fumaric Acid esters are NOT approved. Jeremy's supplier confirms that their Psorex product is NOT FDA approved. They sell the chemical as a nutritional supplement, but make no medicinal claims. Ecological Formulas agrees that any such claims cause the product to be classified as a drug, which would require formal approval and regulation by prescription. They confirm that no safety studies have been conducted, and noted from anecdotal reports that only 40% of patients experimenting with the drug under a doctor's supervision had any significant improvement at all. The doctors report that only a small percentage had any real benefit. Based on that, most people will find the product ineffective. The supplier also mentioned that most doctors track their patients' blood functions during treatment.
Psorex lists only one Fumaric Acid Ester, ethyl fumarate (CAS# 2459-05-4), rather than the more effective dimethyl fumarate. The recent MEDLINE reports are mostly for a German product called FUMADERM which is a mixture of the two esters. Jeremy claims that the monoethyl ester is much safer, but a 1989 MEDLINE report of a comparison notes that the higher doses of monoethyl ester were required, and liver and kidney disturbances in 20% of their patients were proportionally higher (8% for dimethyl fumarate). About 1/4 of the patients dropped out because of serious gastrointestinal complaints. A similar 1990 clinical study concludes, "Until more information has been obtained ... fumaric acid therapy in psoriasis should be seen as experimental."
Please see the newsgroup archive for more details on the controversy. An alternative medicine site called The Arthritis Trust also advocates the use of Fumaric acid esters. Anyone trying this product would do well to find a doctor willing to monitor the treatment.
June 2001 update: The Psorex trademark was abandoned, and the name has been usurped by the promoters of PsoriaLess in promoting a topical treatment (that appears to be based on a retinoid).
The first product at this site was a pamphlet called "Psoriasis: Spot Free in 30 Days" that tells how to eliminate everything but fruits and vegetables from your diet. They want US$25 for the details. Many expensive commercial concoctions are now sold at the site. Apparently the pamphlet alone isn't the solution.
Rather than paying for this booklet, consider free advice from the many people who have posted their dietary successes for the benefit of all in the open USENET support group. Play with a search engine to ferret out some of the food tips. Some people have found, not a cure, but ways to discover and eliminate their individual food triggers. Some people have found that nutritional changes can also improve the outcome of more traditional treatments.
Lupicare by Alwyn
Not so much shameful as overhyped. This company advertises their product with quarter page ads in the Chicago Tribune, and possibly other papers, claiming that it is a new treatment for psoriasis and lupus. At one point it seemed that every few days, someone would pop into the newsgroup after reading an ad, and ask, "Has anyone tried Lupicare?" Alwyn uses impressive drug codes and scientific words on their label like phytoantiinflammatory, which in this case simply means herbal. The ingredients from their web site are Arnica, St. John's Wort, Roman Chamomile, and Witch Hazel. None of these plants are commonly used for treating psoriasis. Contrary to the anti-inflammatory claim, the main ingredient, Arnica, is known to cause contact dermatitis. It is used on that basis as a counterirritant in homeopathic medicine. Unfortunately, various clinical trials have found arnica no better than placebo when used that way. St John's Wort is a strong photosensitizer. Beware any increased risk of sunburn. The other ingredient are innocuous. There are few reports in the global support group of any benefits from using this rather expensive (US$8/oz) product. One customer whose lesions became red and irritated was able to obtain a refund. Please see the news archives for more discussion.
Note: As of 2/16/99, the Alwyn site is off-line without explanation. Last modification date of their page is 6/28/98. 4/99 followup: According to the FDA, the site was voluntarily removed after an investigation and warning regarding therapeutic claims in the newspaper ads.
The original July 1998 FDA warning letter to Alwyn is now online.
5/2000 update: Lupicare is back on the market this year with salicylic acid added as an active ingredient, making it an OTC drug. This allows the company to legally make various safety and efficacy claims for treating psoriasis, and they certainly do that in their new ads. Unfortunately, the basis for these claims is only available to "health professionals" by requesting a password to a protected area of the web site. The data consists of an MSDS (material safety data sheet) for each product, along with test results of irritancy. It's not surprising that the info is not publicly posted. Data for the psoriasis skin cream hints that one in five test subjects reported irritation, and Draize skin tests confirmed mild to well defined erythema (redness of 1 to 2 on a scale of four). Oddly enough, several of the reports are identical except for the product name, and the moisturizer, which contains no salicylic acid, was determined to be more irritating than the treatment creams. Still, the ads say "virtually free of unpleasant side effects". With ingredients like Benzethonium Chloride, BHT, and Methylchloroisothiazolinone, the claim that "all LupiCare products are naturally based" should be regarded with skepticism.
The Electronic Itch Stopper
"Utilizing gentle and highly specific changing energies," the inventor of this device, Huan-Chen Li, claims that it stops itching and clears psoriasis, among a variety of other wonders, such as reducing viral swelling of the genitals. The device appears to be a poorly regulated heating element with a temperature well beyond 125F. Consider using a cheap travel iron instead, or better yet, scalding hot tap water. The inventor has sent relentless spam posts, email and fraudulent testimonials to the support group under various pseudonyms, from both itchstopper.com and his Boston University account. Please see the archives.
1/21/99 - FDA issued a warning letter (requires pdf viewer) declaring the product unapproved for any claims except treating insect bites, adulterated for lack of approval, and misbranded in that the itch stopper is not equivalent to the existing approved device (a powered heating pad) as claimed in the approval application. The manufacturer is revealed to be Xiangfen Dai-You Medical Devices, China. Wouldn't you die to know if this medical device works?
9/23/02 - The June 2001 Itch Stopper patent disclosure describes the exact method used by the device. It is a contact heating pad that cycles on for two seconds, off for 1/2 second, at temperatures between 49-62C (120-144F). For comparison, anti-scalding thermostats don't go beyond 120F, and a typical home coffee brewer keeps the coffee piping hot at 135F. Scalding skin temperature for a child under age five is 120F because their skin is about 1/5 as thick as an adult's. Still, heating adult skin to 140F for five seconds can cause a third degree burn. That the promoters of the ItchStopper specifically recommend it as safe of use on three month old infants is recklessly irresponsible. As for trying this at home, the patent claims that temperatures below 49C (120F) will aggravate itching and skin conditions. That is questionable. Hyperthermia as a treatment for psoriasis has been discussed in the newsgroup and is reviewed at PsorSite.
Psorigon (renamed PS-98) by PharmaVita
This product is widely advertised and available in the UK. Originally called Psorigon, it was banned in Germany, and later in the UK, for containing corticosteroids plus the prescription drug Tretinoin (Retin-A) rather than the listed vitamin A (retinyl butyrate). Psorigon was found to contain two steroids, including the class 1 superpotent clobetasol propionate at .02% strength. That's nearly 50% as strong as the well known prescription Temovate cream. Pharmavita then quietly removed the steroid and renamed the product line to PS-98. People now report that the consistency and color keeps changing, and the effectiveness is gone. Retin-A has not been reported as effective for psoriasis, but potent steroids can clear some lesions in days. Unfortunately, steroids used for more than a brief period can have dangerous side effects. Used long term, the effects dwindle causing the need for ever stronger doses. Severe rebound flares are common if such steroid use is stopped abruptly. In the shadow of the SkinCap fiasco, this looks like a very similar scam. Their "reprints" from journals are full of marketing hype. The company claims it was never tested on animals. Why bother when there are so many willing human guinea pigs? Please see the archives for more information. Also see Ed Dewke's Flake HQ for a firsthand report about a child hospitalized by switching from Psorigon to the ineffective PS-98.
Feb 25, 1999: Simon Rodders, who ran a website promoting Psorigon, finally took the pages offline. For months, he had put up a gateway page with a disclaimer, after an acknowledgment of the banning of Psorigon. He also received many complaints that PS-98 didn't work. Hopefully he will put up a warning page, rather than broken links, for all those people arriving via search engines, still looking for a miracle cure..
There seems to be no end of the claims for Emu Oil from Australia, and Neem Oil from India. A patent for emu oil says that it is not much different from the fatty acid composition of chicken. The claim is that residues from the emu's diet of wild berries have medicinal value. Given that the raised emus are fed a domesticated diet, the claim appears to have no merit. Even if the emus were fed drugs, there might be some residue in the oil, but it would be miniscule.
Similar claims are made for Neem Oil from India. No patents for neem oil make any mention of useful skin applications. "Miracle Herb" claims by promoters that it is beneficial for psoriasis have never been confirmed in the psoriasis newsgroup, or in the medical literature. Neem trees have natural antimicrobial defenses, just like Tea trees, and nearly every other type of plant. Applying plant toxins to your skin is not necessarily wholesome. It is generally recognized that psoriatics do not benefit from topical antibacterial therapy. There may be some exceptions, as with any other treatment.
Butch Ewell's secret cure,aka Bushman
Here's a sample unsolicited email promtion that was received from email@example.com:
Cure Plaque Psoriasis very quickly with an over the counter solution available anywhere.More info at: http://www.angelfire.com/fl/Psoriasis/
This report is from a user who tried it [thank you!]:
I had sent money to Butch E well in Florida. The tratment he offers is nothing but the application of 'IODIDES TINCTURE' on the affected areas three or four times a day. This tincture is an over the counter product which costs a dollar and nineteen cents for a one ounce bottle. He does not mention it in his website but he later mentions in the Email that he sends to you after you send the check that it works only on plaque psoriasis. I thought that it was not fair to people who might have other kinds of psoriasis. I have plaque psoriasis but it did not work for me at all after two months. I had sent the money to him against the advice of my husband who is a highly qualified Physician because I was desperately looking for a cure. While I am disappointed that the Butch Ewell treatment did not work for me, I hope it works for others. I hope they find out about it from this website rather than by paying ten dollars for this information.
Tincture of iodine has generally been replaced by povidone iodine for topical use, because iodine is a strong oxidant and can be damaging to the skin. Povidone iodine releases the iodine slowly. In 1990, the FDA banned many ingredients used in psoriasis products, citing a lack of evidence for effectiveness. One of the ingredients reviewed and dropped was povidone iodine. Iodine 2% solution is available everywhere, but be cautious about experimenting. Talk to a doctor about the possibility of Thyroid complications if that could be an issue. Staining may be a major problem.
Lisa Levan's book -The Psoriasis Cure
Problems even before the book is out. The author has put up a web site at www.psoriasiscure.net with a preview of the preface and conclusion. The two look nearly identical, being a tirade against the toxicity of traditional medicine, the incompetence of doctors, and repeated hype (three times in one paragraph) of her qualifications as a researcher and former psoriasis sufferer. Here's a sample of the misinformation being proffered:
You may have experienced unpleasant and even dangerous side effects from taking artificial prescription drugs. These effects on your body are called "contraindications" by pharmaceutical firms to lessen your repulsion to them and fear of taking the drug. Look at the long list of scary things that can happen to you on the drug package insert on the medicine you are now taking.
Pharmaceutical companies actually call the side effects "adverse reactions" on their "scare sheets". Contraindications are known preexisting conditions that might rule out the use of a particular drug. The list of adverse reactions and potential drug interactions is lengthy because every reaction during the testing trials is listed, whether known to be caused by the drug or not. Many of the reactions would have occurred regardless of the drug. This is a small but important point, and it shows the lack of any critical review taken in publishing this book. Each statement of a scientific basis for the claims calls for more skepticism.
To present any dietary suggestions as a cure is extremely misleading. The author may have had personal success, but psoriasis is a very individual disease. What works for one person does nothing for the next. In the global psoriasis support group, folks have been having some success with diet and vitamins, but many of the author's specific recommendations have been tried and dismissed years ago as hype and scams. The author has already begun hawking her book in the support groups, where the consensus is that no promotion is allowed.
The publisher was alerted to some of these problems in fall of '98, when the site first appeared. The book may well be a disservice to the millions of people who have this incurable disease.
Review posted to Barnes and Noble 4/26/99
June 2001: The site is gone, and the domain name grabbed by a cybersquatter.
Sept 2003: The site has been taken over by a new PsoriaisisCure scammer.
Gil Teva's UVB lamps
This marketeer from Jerusalem, Israel has had his web site banned from two previous providers for violating their acceptable use policies. Repeated promotion in the Usenet support groups, dumping binary images, and broadcasting unsolicited commercial email. He has finally found an ISP that ignores complaints, and Geocities couldn't care less. Gil's first introduction to the group was a promotion asking for half a million dollars to fund his venture. Failing that, he then began selling what appeared to be full spectrum fluorescent reptile lamps as phototherapy units. He now promotes his UVB lamps to US customers with rather inflated prices in US dollars. This is clearly an end run around the requirement of a doctor's prescription for purchase of UVB bulbs and equipment in the US, making this an illegally imported medical device, liable to be confiscated by customs. There is good reason for the prescription requirement. UltraViolet-B are the burning rays, and using the bulbs without eye protection can cause severe conjunctivitis. Proper therapy with UVB is a tricky thing, requiring slowly incremental doses to maintain the exposure just below the point of causing a burn. The therapy is also considered potentially carcinogenic. None of these warnings are presented at Gil Teva's site, in fact, just the opposite. He claims his product is a cure, which it is not. He also promotes his lamps in the acne support group, where the treatment is considered to do more harm than good. He repeatedly gives inaccurate advice, often in an apparent attempt to simply get his tagline listed. Please don't support any unethical promotion in the Usenet groups.
Chris Cane, another UV lamp salesman has also been hawking his wares in the support newsgroups. His first attempt was healthytan.com which must be considered an oxymoron, since tanning is not healthy for the skin. In setting up a web site to target psoriatics, he first chose the name puvb.com thinking that the P in PUVA stands for psoriasis rather than psoralen. Once this was pointed out, he changed the name of the site and now presents as "facts" a long list of inaccurate and misleading claims about the newer narrowband UVB phototherapy bulbs now available. As long as Amjo continues to promote prescription products this way, please take your business to any other supplier. Since Amjo is a main marketer of Daavlin products, a letter of protest to Daavlin may be one way to voice disapproval of these tactics.
D.P. Ray - Skytrax.com
At his skytrax.com site in Texas, Dennis Paul Ray asks that you send him $10 for information about his secret regimen that has cleared and psoriasis, and that of his son and brothers. On another page at the site, a toll-free number is listed for purchasing controversial diet pills containing ma huang, from Greg Ray. Greg turns out to be the only son, but said that he doesn't have psoriasis, and never tried the product. Greg did disclose that his father recommends using vitamins C and E, plus a Night Rinse that he got from Hawaii. DP responded quickly with more information and a link to the secret page and extra info on his web site. A new search tool at his site reveals another explanation of his regimen.
The Night Rinse turns out to be a liver cleanse product that contains: "Bentonite powder, Wheat grass powder, Psyllium husk powder, Red clover tops powder, Cascara sagrada bark powder, Buckhorn bark powder, Rhubarb root powder, Black walnut shell powder, Milk thistle herb powder, Diatomaceous earth, Gentian root powder, Lacto acidophilus, Chamomile powder."
Don't fall for this quackery. Taking even small quantities of colloidal silver into the body can cause the skin to be permanently discolored in a medical condition called argyria. The skin and internal organs retain the silver and turn a dull gray. One victim tells her story and provides a FAQ to counter the many claims of the promoters.
9/16/99: An FDA final ruling takes effect declaring that all OTC drug products containing colloidal silver or silver salts are not recognized as safe and effective and are misbranded.
6/2001: The FDA has been concentrating on colloidal silver claims in their Cyber Letters campaign to warning promoters of regualtory violations.
psoriasiscure.net Say Goodbye To Psoriasis! secret ebook
Sept 2003 - The PsoriasisCure.Net site has surpassed all the other lame scam sites that belong here by making this claim:"There's no scam involved, just good, proven, solid information you can use to eliminate your psoriasis. Is it legal? There are absolutely no problems associated with the FDA, or any other agency regarding this treatment or the product involved. We also are NOT LISTED in the psoriasis hall of pshame, nor do I ever expect to be as the treatment is safe, legal, and most importantly, produces fantastic results."
Selling secrets isn't illegal in itself, but the way this promoter is doing it is. It doesn't fall under the jurisdiction of the FDA, because no medical device or treatment is being sold. It's simply a scam because there is no hint about the actual information until payment is made, and the information turns out to be freely available all over the net. It is certainly not worth the asking price of $25 (or up to $42 including "shipping and handling" depending on how the virtual product is ordered.)
Spamming the psoriasiscure.net site in various forums (and on PRweb) isn't necessarily illegal, but it's probably grounds for cancelling of the promoter's hosting for violation of his various service agreements. That intrusive spamming is what brought the site under scrutiny. A brief investigation reveals that the ebook [was] available for free download at the site.
There Jim Longnecker tells a story of his various life crises. Following his second ex-wife to Austin, TX, he finds that his psoriasis began to improve after his stressful move into a new house. He somehow attributes this improvement to the magic of owning a water softener. Water softening is a topic of past newsgroup discussions, and it is by no means a cure. Longnecker admits that psoriasis still covers 1-2% of his body, but he is still "99% sure" that it's a cure for everyone with all types of psoriasis, including psoriatic arthritis.
He goes on to claim that salt baths are an unreported method of treatment that may work in lieu of buying a water softener (assuming you don't already have one.) He suggests adding a handful of water softener salt pellets to the bath. That actually doesn't work, because they don't readily dissolve. (A better method for salt baths is to dissolve a few cups of bulk table salt in a bucket under the tap while filling the bath.)
It is not illegal to use "sock puppets" to talk to oneself. Jim has put up a support forum on his site but the only posts at this time are Jim immediately answering a question that he asked himself under his "golferboy" alias, created when he first set up the site.
The previous incarnation of psoriasiscure.net actually is listed here, but telling white lies isn't against the law, nor is reanimating abandoned domain names.
The illegal aspect of the promotion relates to the content of the 50 page ebook, which is largely made up of infringements on copyrighted text from public web pages. Some 10 pages are taken from the NPF "It Works For Me" book and member pages. Another 10 pages are a direct infringement of this pinch.com site's entire copyrighted Skin-Cap FAQ. Longnecker removed the original copyright notices and replaced them with his own. He underscores his willful infringemet by stating stong penalties in his two pages of legal notices warning others against infringing on any of his own copyrights.
It's apparent that Jim Longecker is rather clueless about what it takes to get inducted into this Hall o' PShame, since he seems to have been begging for recognition. Other sites like beatpsoriasis.com use similar spamming tactics and also infringe copyrights, but it's rare to see all the tactics rolled so nicely into one package just ripe for a lawsuit. It's as if some promoters see the sites here only as a blueprint for making a new "Say goodbye to your money!" scheme.
Apr 2004 update: It has been brought to my attention that Longnecker has now added libel to his offense of infringment. The links above which briefly pointed to his ebook now point to his rebuttal to the review. There, he makes a personal accusation of "hacking" into his website, being an "internet thief", and "stealing" his documents. Those are serious misstatements. He also mischaracterizes our exchange, saying that the links here were modified after he threatened legal action. To set the record straight, the document was originally revealed with a simple Google search. Longnecker posted a pubic request for help with a broken link which pointed to his ebook. The link contained an errant space, which was simply removed and the document loaded. Characterizing that as computer hacking is a lie. The document was not stolen. This page merely referred to his published document with the repaired URL. The link was presented largely as evidence that Longnecker was infringing on pinch.com work by republishing it (poorly) as his own copyrighted report. In fact, it was the entire Skin-Cap FAQ document that was plagiarized for profit by Longnecker.
He also rebuts that the link to his document was modified after he threatened legal action, and that no copies of his document were requested. That's nearly the opposite of the truth, as simply revealed by the actual email exchange. A demand was sent that he desist infringement and send copies of the revised ebook. Also demanded were prorated royalties on 20% his sales (the proportion of pinch.com content in his publication) which would then be donated to the NPF. Longnecker admitted infringement but refused to settle. (This begs the validity of earlier claims on his website that a significant portion of the sales would be donated to the NPF). Since he has not provided any proof that his ebook is no longer infringing, it is questionable whether the content remains unchanged. Longnecker still shows ignorance of copyright law (despite clear explanations) when stating that he thinks pinch.com web pages are in the public domain and free for his reuse. Any published document carries an implied copyright, whether it is declared or not.
The Hall of PShame is still of the opinion that Longnecker's promotional tactics make the book a scam. He still uses "sock puppets" to promote his pages by posting raves about his own book under his golferboy alias, and tried the same fraud in the usenet newsgroup as Jlongn8718@aol.com. His unwanted promtions on various forums are pure spam, and he even puts up faked search result pages in an attempt to grab more search engine hits. It must be a profitable scam, though, since he can apparently afford to pay the high click-through fees should anyone follow his psoriascure.net banner ads after Googling on "psoriasis".
As stated in the earlier review, free tips about the benefit of salt baths and such for psoriasis are abundant on the net. It's the reselling of the freely available info as a secret "PsoriasisCure" that makes it a fraud.
The Skin-Cap FAQ
Psoriasis Self-Help Info Page
Psoriasis Newsgroup Guide
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