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Psoriasis Newsgroup FAQ v. 3.0


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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

See reader questions & answers on this topic! - Help others by sharing your knowledge
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
alt.support.skin-diseases.psoriasis">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
alt.support.arthritis">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

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