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Subject: Psoriasis Newsgroup FAQ v. 3.0

This article was archived around: Mon, 05 Sep 2005 01:24:24 GMT

All FAQs in Directory: medicine
All FAQs posted in: alt.support.psoriasis, alt.support.skin-diseases.psoriasis
Source: Usenet Version


Archive-name: medicine/psoriasis Posting-Frequency: Monthly Last modified: 2004/08/08 Version: 3.0 URL: http://www.psoriasisfaq.com Copyright: 2000-2005 Kim Malo
CONTENTS Newsgroup Basics Psoriasis Basics Psoriasis Treatments Future Treatments And The Research Pipeline Broad-based Psoriasis Information And Support Sources More General Search Resources Children With Psoriasis Where To Find A Dermatologist Psoriatic Arthritis (PA) Related Links Other Psoriasis Communities Flakes and Popular Culture Miscellaneous Newsgroup Basics Newsgroups While you may see two different psoriasis usenet groups on your newsfeed, please restrict posting to alt.support.skin-diseases.psoriasis (ASSDP). That was long ago established as the sole active group and is the only one carried by many newsfeeds or archived by Google. Since this FAQ appears in both groups, you should take a moment now to verify that you are in the active group. For the story behind why two groups exist, see Krauster's story at http://www.psoriasisfaq.com/KraustersStory.htm To go to the active group, click on news:alt.support.skin-diseases.psoriasis Posting Guide The Psoriasis Newsgroup Posting Guide at http://www.pinch.com/skin/guide.html offers guidelines to civil newsgroup life along with a link to the newsgroup charter, updated by the original author to clarify the role of promotion on the newsgroup. Google Google maintains the primary centralized usenet archives at http://groups.google.com Google's interface lets you browse, search or post to newsgroups. If you have a specific question,it's strongly recommended that you search prior discussion in the archives before posting it. You're likely to end up with a larger pool of responses than any new post will generate and it's a courtesy to others through limiting the need to keep repeating the same answers. You can go straight to the Psoriasis newsgroup on Google at http://groups.google.com/groups?hl=en&group=alt.support.skin-diseases.psoriasis or use the links for easy searching at The Skin Page at http://www.pinch.com/skin Things you should know... Giving and receiving help and support is not always as straightforward as it appears, no matter how well intended. There are some key facts and ideas about dealing with psoriasis that should be kept in mind when offering help and support or evaluating help and support received. They've been posted to the newsgroup in multiple versions. This Itch List at http://www.psoriasisfaq.com/Itch.html is my attempt to bring them together in one place. Psoriasis Basics What is psoriasis? Psoriasis is a chronic immune-mediated genetic disease whose symptoms appear on the skin, and -for those with the associated arthritic condition- in the joints. Great, now tell me something I can understand - what's all that mean? Chronic means continual. Symptoms may go away, but the underlying disease causing the symptoms remains and so they may return. And in fact, many psoriatics experience ebbs and flows in symptoms; in response to treatment but also for no apparent reason. Because the cause of the symptoms remains, chronic also means incurable, making it wise to be suspicious of claims to actually cure psoriasis. However incurable doesn't mean there is nothing to be done, so just learn to live with it. For most people, symptoms can be controlled to create an effective cure, even if not a permanent one. Immune-mediated means that the disease works through the immune system. It's not a disease of the immune system, such as HIV. Instead a problem elsewhere (in the genes) makes it possible for a particular part of the immune system to be triggered into improper activity. Think in terms of a faulty on/off switch rather than a problem with the wiring itself. With psoriasis, that improper activity causes skin cells to grow much faster than normal (3-7 days from new cell to flaking off rather than the normal 28-30 days), at about the rate the body normally uses to heal a skin wound. The result is a build up of skin cells that also aren't properly developed, leading to flakiness, the redness of inflammation, and all the other symptoms of psoriasis. Genetic means the disease is rooted in the genes. You can only get the disease through inheritance or environmental factors causing the right mutation in your genes. Psoriasis is not contagious. You can't catch it from someone else or pass it on like a cold. What causes psoriasis? Since psoriasis is a genetic disease, its actual cause is having a certain pattern in your genes. Research is still working out exactly what that pattern is, with the answer made more difficult by the likelihood that there are multiple genes involved. However, even with the genetic pattern, you still need the action of environmental factors referred to as triggers to activate the disease into showing symptoms. There are an unknown number of possible triggers, starting with such things as stress and infections, but none are universal and none work the same on everyone with the genes for psoriasis. Because of the need for a trigger before symptoms appear, it is theoretically possible to have the disease -the underlying genetic pattern- without ever knowing it, if it is never triggered into showing symptoms. This may complicate efforts to trace the inheritance of the disease for some people. The likely involvement of multiple genes may also confuse efforts to trace inheritance, since that means it may be possible to inherit part of the necessary genetic pattern from one parent and the rest from the other parent. This difference between cause and trigger is also important to keep in mind when evaluating claims to cure psoriasis. Eliminating a trigger may get rid of symptoms but still leaves you open to their being triggered into reappearing. Eliminating the cause means there's no disease to be triggered. A lot of alternative treatments claim to treat the cause of psoriasis. However, since they don't actually modify the genes, the most they can really do is treat symptoms or target potential triggers. That can be very helpful, but still leaves you open to the effect of other potential triggers. Further information You can find more detail about the above questions and related issues such as What are the different types of psoriasis How is psoriasis diagnosed? Can I prevent psoriasis What are the demographics of psoriasis - who gets it, at what age, etc. at a number of places on the net. Some reliable starting points are: the NPF Facts overview at http://www.psoriasis.org/facts/ and the NPF statistics page at http://www.psoriasis.org/resources/statistics the US National Institutes of Health site at http://www.niams.nih.gov/hi/topics/psoriasis/psoriafs.htm the American Academy of Dermatology Psoriasisnet site http://www.skincarephysicians.com/psoriasisnet/whatis.htm and the MedlinePlus listing for psoriasis at http://www.nlm.nih.gov/medlineplus/psoriasis.html Psoriasis Treatments Overview There is no 'best treatment' for psoriasis. Not just because of the usual issues of side effect risk, cost, or availability. But because one of one of the major sources of frustration for both doctors and patients is that there is no treatment that works for everyone or even works the same for everyone it does help. This means that the best approach involves a willingness to experiment a bit to find which treatments work best for you, rather than relying on something just because it was known to help others. With particularly stubborn cases it may also mean using combination therapies, pairing treatments together that have often been shown to be more effective in combination than on their own or to reduce side effect risks through using a reduced dosage over what would be needed if you relied on one treatment alone. It may also mean using a rotation of therapies. This too is done to reduce side effect risks from over-reliance on any one therapy, but also to avoid the reduced effectiveness (called tachyphylaxsis) that many experience with continued use of any one treatment. Available treatment options fall into three basic categories: the new biologics, the standard conventional medicine options, and alternative therapies. Biologics The current buzz in the psoriasis world revolves around a new category of treatments called biologics. New to treating psoriasis, although biologics in the form of things such as vaccines and insulin have been around for over 00 years. Unlike most standard drugs, which are synthesized chemically, biologics are derived from natural sources: human, animal, or microorganisms. As to how they help psoriasis, it's a bit of an oversimplification, but basically they make it more difficult for the improper immune system activity causing the symptoms to occur. The biologics currently available do this through reducing the number of excess immune cells in the skin, preventing them from becoming activated, or both. For more information about biologics in general and the specific ones currently available to treat psoriasis, check out the overview at the NPF site http://www.psoriasis.org/treatment/psoriasis/biologics.php For information about biologics in general, start with the CBER FAQ at the US FDA Center for Biologics Research and Evaluation at http://www.fda.gov/cber/faq.htm You can find detailed information about individual biologics at Rxlist at http://www.rxlist.com And finally, each of the biologics has its own commercial website with information about the therapy and about psoriasis in general. Those can be reached by simply putting a .com after the drug name to make a URL. A list of the drug names can be obtained at the above NPF overview. While these manufacturer's sites really do have information worth reading, it's also important to remember when evaluating what you find there that they are intended as much to be marketing tools as information sources and will present their own product in as positive a light as possible compared to other options - not just other biologics, but in some cases being overly negative about more standard treatment options. Standard Conventional Medicine Options These can basically be divided into 3 categories - topicals, phototherapy, and systemics. Topicals are substances you put directly on the patches of psoriasis, such as corticosteroid creams or coal tar ointments. Phototherapy is treatment with lights. Systemics are substances that are taken into the body through shots or being swallowed. There are a number of options within the categories, with a good overview of what's available and some of the reasons for choosing one option over another at the NPF site in the treatment section at http://www.psoriasis.org/treatment/psoriasis Alternative Therapies Overview There's an amazingly broad range of things claimed to help psoriasis, many of which may well help some people. Others range from active scams to well-meant confusion over cause and effect or the nature of the disease. Sometimes it's hard to judge which is which. The role of triggers makes it possible for such things as lifestyle changes to alleviate symptoms by eliminating a possible trigger without directly treating the disease itself. While those for whom stress is a trigger may be particularly susceptible to a placebo effect where they see benefit simply from doing something that they have a high comfort level about using as a treatment, separate from the treatment's real effectiveness. The result is that, given an increasing popularity of alternative approaches to all health issues and the chronic nature of psoriasis with no sure conventional treatment cures, it's easy to see why alternative approaches are increasingly popular among psoriatics. However, treating psoriasis does not have to be an either/or of alternative vs conventional medicine, and the best approach may well involve a combination of both. That basic rule to remember in selecting psoriasis therapies - nothing works for everyone or works the same for those it does help - applies here at least as much as it does with conventional medicine. More perhaps, because of some of the reasons that people find such treatments so appealing: ease of access and reports of miraculous successes shared among sufferers rather than instructions involving merely possible benefit imposed by a doctor. Those aspects of alternative therapies are based in things that create a need for additional caution, since alternative therapies are not regulated for quality control or safety in the same way as conventional medicine and often involve strictly anecdotal evidence backing recommended approaches rather than the sort of regulated testing and analysis that occurs before conventional therapies are made available. Credibility of the source is a key consideration when considering an alternative therapy, particularly since it's not uncommon for people to post in forums such as the newsgroup pretending to be another helpful sufferer when they are actually offering a sales pitch they hope to profit from. Because of these concerns about credibility and commercial conflicts of interest, anyone interested in alternative treatments should begin with searching previous newsgroup discussion http://www.pinch.com/skin Then cross reference through other sources clearly without a commercial interest, such as the treatments section of Psorsite at http://www.psorsite.com/treatments.html or the alternative treatments section of the NPF site at http://www.psoriasis.org/treatment/psoriasis/alternatives.php Separate from whether a given treatment will help your psoriasis, it's important to realize that it might also do harm - alternative or natural does not equal safe, with no side effects. While suggested alternative treatments have occasionally triggered some people's psoriasis into worsening. These treatments can have risks, including interactions with other medicines. Places to find out about some of these include the usual search of the NG archives http://www.pinch.com/skin the alternative section at Rxlist http://www.rxlist.com/alternative.htm the herbal warnings page at Psorsite http://www.psorsite.com/docs/herb_warnings.html or the vitamin toxicity section at emedicine http://www.emedicine.com/emerg/topic638.htm Diet and Lifestyle Convention wisdom says there's no dietary link to psoriasis. However, there's enough anecdotal evidence to indicate that many psoriatics can benefit from a healthier diet and lifestyle, while some psoriatics are subject to more specific dietary triggers. What the anecdotal evidence also shows is that there is no single psoriasis diet, although several are promoted. Not everyone is subject to dietary triggers, and those who are subject have a lot of variance in which foods have an effect. If you want to explore this approach, a search of the newsgroup is the best place to start http://www.pinch.com/skin It will not only show how variable these triggers can be, but also helps identify which ones seem most common as a likely starting point for experimenting. Herbal Medicine and Supplements There is also a fair amount of anecdotal evidence that some, if not all, were helped by some of these products. However, as with diet, there is no single herbal or supplement solution, even among those who are helped by such things and no matter what claims are made in product promotions. Again, a search of the newsgroup archives http://www.pinch.com/skin is highly recommended. There tend to be cycles of popularity with these approaches, so that what is dominating the newsgroup today may differ radically from what was being said a couple of months ago or may have been looked at differently then. It's also really important to identify the ingredients in anything you take and the risks associated with them. Some 'herbals' have been found to contain prescription steroids among their active ingredients and there have been toxicity issues with others. Also, you may be able to find the same ingredients more readily and more cheaply elsewhere. Psorsite is very useful in identifying some of what's offered specific to psoriasis and where to find out more about it. The site has separate sections for herbals http://www.psorsite.com/herbals.html supplements http://www.psorsite.com/vitamins.html oils http://www.psorsite.com/oils.html and Chinese Traditional Medicine (including acupuncture) http://www.psorsite.com/tcm.html Where to find out more about medications Rxlist Rxlist at http://www.rxlist.com is one of the more comprehensive of the many sites on the web giving drug information. It offers a searchable database of basic information about both conventional and alternative medications. With more detailed information available including such things as how to use the medicine, common interactions and results from trials of the drug. Scalp Psoriasis The scalp is one of the most common and frustrating places for psoriasis to appear. Dr Joe Bark, a dermatologist who occasionally participates in the newsgroup, has posted an essay suggesting some readily available basic approaches to dealing with it, reproduced at http://www.psoriasisfaq.com/Scalp.htm While there are some newer options available, this is still a good starting point. Future Treatments And The Research Pipeline Even though there isn't yet a cure for psoriasis, there is an ongoing search for safer and more effective treatments. There are a number of places you can see what's in the research pipeline, including what clinical trials may be available. Some good starting points include: The NPF The Research Pipeline section of their site at http://www.psoriasis.org/research/pipeline/ gives a good overview of the testing and approval process and has links to both a chart showing the status of drugs in development http://www.psoriasis.org/research/pipeline/chart.php and a listing of clinical trials http://www.psoriasis.org/research/trials/ the NPF has been notified are open to signing up new people. You can also find out more about some of the drugs in development through searching the rest of their site. PhRMA The Pharmaceutical Research and Manufacturers of America (PhRMA) has it's own searchable database of new medicines in development for a number of diseases, including psoriasis at http://www.phrma.org/newmedicines/ NIH The US NIH provides a searchable database of private and government clinical Trials at http://clinicaltrials.gov/ct/gui Signals article Signals magazine has an online article at http://www.signalsmag.com/signalsmag.nsf/0/59D864E70A7D28DB88256B020013FA6B that looks at the psoriasis drug development process from the unique perspective of a relative insider who has the disease himself. It's worth reading for better understanding of the development process and for the overview it gives of psoriasis itself. Broad-based Psoriasis Information And Support Sources The American National Psoriasis Foundation (NPF) Even though it's a charitable organization based in the United States, the NPF and its site http://www.psoriasis.org are intended to be a resource for everyone, with solid website content open to non-members to go with the members-only sections and a membership open to anyone worldwide. The publicly accessible parts of the site provide a good overview of basic information about psoriasis, its treatment, and the current state of research. The members only sections include forums and chat to go with online versions of NPF publications. Dermatlas Online Digital Dermatology Image Library Psoriasis is usually diagnosed by examination, which can tempt people into do-it-yourself diagnosis using the illustrations at sites like this. It's really not a good idea, since psoriasis can resemble other conditions and you need expertise to properly judge what you're looking at. So long as you remember that caution, Dermatlas http://www.dermatlas.org is a really helpful site. Intended as a resource for everyone from patients to professionals, it combines good clear pictures with some handy navigational tools and easy access to further information. EdA's Skin Page The Skin Page at http://www.pinch.com/skin has links to a variety of psoriasis-related subjects at Ed's own site, including the often controversial Hall of Pshame http://www.pinch.com/skin/pshame.html dedicated to scam and misinformation de-bunking. Regardless of your thoughts on any of the specific subjects targeted there, the site provides some valuable lessons on the need to be careful about accepting product claims at face value. The International Federation of Psoriasis Associations (IFPA) The website http://www.ifpa-pso.org/ for the IFPA, of which the NPF is a member, gives contact information for worldwide psoriasis organizations, along with copies of the IFPA newsletters providing articles of interest to people with psoriasis worldwide. NIH The United States' National Institutes of Health (NIH)'s MEDLINE PLUS page for psoriasis http://www.nlm.nih.gov/medlineplus/psoriasis.html provides quick links to a variety of NIH and outside information sources, including a one click pre-set link to MEDLINE searches of recent psoriasis research. PsoriasisNet The American Academy of Dermatology PsoriasisNet site http://www.skincarephysicians.com/psoriasisnet/ includes the usual psoriasis basics plus some useful features, notably: A Glossary of terms, including many that appear on the newsgroup but may be unfamiliar. http://www.skincarephysicians.com/psoriasisnet/glossary.htm An overview on the role of genetics in psoriasis, targeted to the layman http://www.skincarephysicians.com/psoriasisnet/feb.htm and discussion on how the recent advances in the Human Genome Project relate to psoriasis http://www.skincarephysicians.com/psoriasisnet/update_november.htm Psorsite Psorsite http://www.psorsite.com is probably the most comprehensive collection of information about psoriasis on the web. Topics covered range from a short list of important misconceptions (that still pop up regularly on the newsgroup) to explanations about psoriasis terminology and links to sites offering psoriasis treatments and products. More General Search Resources The Skin Page The Skin Page at http://pinch.com/skin/ , mentioned above, also has a very useful variety of links for searching out information about psoriasis or other medical concerns. One nifty feature of searching from this site is that it generates a short new URL you can easily copy into email or a newsgroup post to let someone else see the same search results. Webwillow Psoriasis Webwillow psoriasis at http://pso.webwillow.com/ includes some of the same search resources as the Skin Page, but really uses those as only a starting point. It provides a much wider array of searches and links of interest, helpfully grouped together by categories. Children With Psoriasis While many psoriasis sites and resources discuss juvenile onset psoriasis, very few of them outside the technical medical journals significantly differentiate it from adult onset. And there are some key differences to consider, starting with social issues and the different risks associated with using psoriasis treatments for adults on developing bodies. The NPF still does the best job of addressing these differences with their Kids, Teens, and Parents resources http://www.psoriasis.org/youth/kids/ Where To Find A Dermatologist A given derm may be a very good doctor, but with primary expertise and interest in something other than psoriasis. Therefore word of mouth recommendation from someone else you trust is still the best way to find a derm who can help you. Another option is to look for recommendations at local teaching hospitals, which tend to be one of the best sources for medical specialties: particularly when you need a specialist among specialists, such as a pediatric derm specializing in psoriasis. NPF Directory In the United States, the NPF offers an excellent online searchable Directory at http://www.psoriasis.org/resources/directory/ listing physicians who have registered with them that they treat psoriasis and psoriatic arthritis. Access is limited to members, but that includes website-only registered members rather than just dues paying full members. Inclusion in the directory is not intended by the NPF as endorsement of any given doctor. AAD Find a Derm The American Academy of Dermatologists also has a derm-locating resource at http://www.aad.org/findaderm_intro.html but few listings make it clear if the derm has a psoriasis specialty. Psoriatic Arthritis (PA) Related Links Arthritis NG The support newsgroup for arthritis in general is alt.support.arthritis. You can access it via Google at http://groups.google.com/groups?hl=en&group=alt.support.arthritis or through your regular newsfeed, if you have one set up, at news:alt.support.arthritis DrDoc DrDoc Online is the noncommercial informational site of a practicing rheumatologist in South Africa. The PA section of his site at http://www.arthritis.co.za/psoriasis.html covers the basics on how to diagnose PA and discusses the usual methods of treatment. The site also has some useful general information, including a first appointment checklist http://www.arthritis.co.za/consult.html worth reading for anyone facing a new doctor, not just those with PA. NPF PA resources The NPF site http://wwww.psoriasis.org also has a number of psoriatic arthritis resources, including facts and treatment overviews, but also a discussion forum dedicated to PA. AOL AOL has a number of member-only resources available. LadyAndy, one of the ASSDP regulars, hosts several live online chats and has kindly posted to the newsgroup that people could email her for info on AOL specific resources. You can contact her through the newsgroup, or use the link to my email below to submit a message for forwarding to her. Other Psoriasis Communities There has been an explosion in online psoriasis communities, resulting in too many to provide a comprehensive list here. While any partial list would involve the appearance of endorsing some over others or require a lot of balancing of the agendas some resources have. The best way to find one for yourself is to decide what sort you're likely to be most comfortable with - chat, mailing list, website based forum (closest to the NG) - then ask people on the newsgroup or in other psoriasis communities you already trust about which ones they recommend and why. You can also try searching under psoriasis at known group or chat hosts such as Yahoo and MSN, searching the NG archives, or just doing a websearch under the words psoriasis and the sort of group you're looking for: chat, forum, mailing list. The only one I will mention is because it's one of the longest running ones out there, has a number of resources other than the community exchange boards, and allows non-members access. Ed Dewke's Flaker HQ site at http://www.flakehq.com is informative, but also fun and funny. It includes the usual, but also things like a painfully funny list of what NOT to say to someone with psoriasis to help trigger the happier alternative when you're at the laugh or cry stage. Flakes And Popular Culture Famous people with psoriasis Among other things covered at Gary Shine's site is a bit about some famous people with psoriasis http://www.netlink.uk.com/psoriasis/traf.html Art Garfunkel mentions having psoriasis in an online interview at http://www.artgarfunkel.com/articles/cjn.htm Jerry Mathers, who starred in the old American TV sitcom "Leave it to Beaver", has psoriasis and has gone public about it as the spokesperson for a campaign sponsored by a partnership between the NPF and Biogen. An article from the British Medical Journal offers a few more famous names http://www.bmj.com/cgi/content/full/315/7123/1709 Flake Flicks A trip into the outer limits leads to the Skinema site on dermatology in the Cinema http://www.skinema.com/ A search under psoriasis turns up the only known film about psoriasis: Dennis Potter's "Singing Detective" (recently remade). But psoriasis also turns up in some of the onsite discussions. Something to Sing about And even further into the limits is the Root Boy Slim song Heartbreak of Psoriasis http://members.aol.com/geekox3/heartbre.htm , with lyrics that may strike a flaky chord. Miscellaneous Psoriasis Books JerryJ's Pbooks site http://www.jhj.com/pbooks/ has links to major online booksellers pre-set to list psoriasis-related books. Buying books or anything else available at these sites through his links benefits the NPF at no extra cost to you. That's ANYTHING, not just books, not just the P-related stuff. Go crazy in a good cause. Send me E-mail about this page mailto:admin@psoriasisfaq.com?subject=PFAQ_page Link to the psoriasis newsgroup through your direct newsfeed news:alt.support.skin-diseases.psoriasis Crossposted to alt.support.psoriasis and alt.support.skin-diseases.psoriasis