Blogging about Behcet's

Behcet's is an isolating illness for many people. Online support groups can help people feel less alone, and formal organizations (like the American Behcet's Disease Association, Behcet's Canada, and the Behcet's Syndrome Society in the U.K.) are invaluable sources of information.

There's nothing quite like blogging about Behcet's, though. It's an opportunity to share your story with other people. It lets you raise Behcet's awareness, even if you don't think anyone else is reading....because, guess what? I'm not the only person who searches online blogs for people who write about BD. You may never hear from your blog's readers, but trust me, they're out there -- and some of them are desperate for information.

If you decide to start a Behcet's-related blog, or even if you have one now, be responsible about what you share. For example:

* Some of your newer readers may have just been diagnosed with Behcet's. Remember what that was like? Most newly-diagnosed people are frightened and upset, and there are already a lot of Behcet's-related websites that will scare the living daylights out of them. Share anything you want or need to about your own situation, but remember that every BD patient is different. Your experiences may be much more severe (or much more mild) than the experiences of your readers.

* If you quote from medical journal articles or books about Behcet's, be sure to reference the original source. Your readers (or their doctors) may want to locate the source that you're quoting from.

*Keep those copyright laws in mind! It's ok to give short quotes from already-published material (with the proper reference), but don't post articles or chapters without getting permission in advance from the author(s) or journal.

* If you've had a really bad experience with a doctor, write whatever you like, but think twice before publicly posting that doctor's name in your blog. It's better to report the doctor(s) to your state's medical board than risk legal problems by posting names. If you've had a great experience with a doctor, though, let the world know! There are too few doctors who will go the extra mile for BD patients. Give them the kudos they deserve.

Here are a few blogs that occasionally (or often) post about Behcet's-related issues and experiences.

http://dailydilemmaoflife.blogspot.com

http://exquisitecreationsbyelizabeth.blogspot.com

http://thewonkyquilter.blogspot.com/2008/08/girl-gone-wild.html

http://sporkworld.tumblr.com

http://www.tracetalks.blogspot.com

And finally, there's the "Behcet's Corner" blog from Sanya Richards. She's recently become a spokesperson for the ABDA, following her 2008 Olympic gold medal performance!
http://www.sanyarichards.net/blog/?cat=20


I may not have time to post again this week -- so Happy Holidays to all! Maybe you can make a New Year's resolution to start a BD blog yourself. If you do, let me know. I'll update my list of blog URLs in a few weeks.
All the best,
Joanne

When you can't afford your Behcet's meds

A quick post for today:

If you qualify, there are some patient assistance websites that can help you pay for some of the expensive meds used to treat Behcet's.

Start your search here: The Partnership for Prescription Assistance.
It offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies.
https://www.pparx.org/Intro.php

You can also try the American College of Rheumatology's list of pharmaceutical companies offering patient assistance programs for specific (expensive) drugs like Enbrel, Remicade, Humira, etc. Access the list here: http://www.rheumatology.org/public/acrast.asp?aud=pat

More info from the 2008 Intl Conference on Behcet's

The International Society for Behcet's Disease is made up of physicians and medical professionals around the world who do research on BD, and/or who are experienced in treating Behcet's patients. The ISBD sponsors the international BD conferences, which take place every other year. The ISBD has just posted a PDF file on their website with an overview/outline of the 13th International BD Conference that took place in Austria in May 2008.
WARNING: The PDF is 4.0 MB, and unless you have high-speed internet access, it takes a while to download -- it's 36 pages, but it has some good info. (The second half of the PDF is the most interesting):
http://www.behcet.ws/pdf/13th_IBCD.pdf

There are also links to summaries of the 11th International Conference in 2004 in Antalya, Turkey (found at: http://www.behcet.ws/default.asp?UnitID=11&parentID=12 )
and the 10th International Conference in Germany in 2002 (found at:
http://www.behcet.ws/default.asp?UnitID=11&parentID=13

According to the ISBD website:
The 14th International Conference on Behcet’s Disease will take place at
Queen Mary College, University of London, 8 - 10 June 2010.
Information on the conference's location (but NOT on the conference itself) can be found here: http://www.ccrs.qmul.ac.uk/conferences

I'm hoping to go to this conference, if the economy ever picks up before 2010 :-O

Handling acute pain in Behcet's patients already taking opioid pain relievers

Some Behcet's patients have pain that can't be controlled with regular, over-the-counter pain relievers. In these cases, stronger doses of pain meds, or even prescription opioids (narcotics), may help -- but what happens when patients taking these meds need surgery? There are horror stories of patients forced to taper or withdraw from opioids before surgery, or denied additional pain relief after surgery, because s/he's "already taking opioids, and doesn't need anything else."

Doctors who feel this way need up-to-date information about treating patients with opioids. No one should have to suffer.

The following interview is reproduced with the permission of painEDU.org, an educational website for clinicians, teaching about pain assessment and management. painEDU.org is produced by Inflexxion, a scientifically-based, multimedia company specializing in healthcare business solutions.

(BTW, I work for Inflexxion)


Acute Pain Management in the Opioid-Tolerant Patient
An Interview with Kathleen M. Colfer, MSN, RN-BC
By Evelyn Corsini, MSW, LICSW
Inflexxion

Kathleen M. Colfer, MSN, RN-BC, is a Clinical Nurse Specialist, Acute Pain Management Service, Department of Anesthesiology, Thomas Jefferson University Hospital in Philadelphia, PA. This interview includes content she presented in a session at the American Society for Pain Management Nursing National Conference in September 2008.

Evelyn Corsini:
How did you become a specialist in pain management?

Kathleen M. Colfer, MSN, RN-BC: I have been a nurse for 23 years and have a Master’s degree from the University of Pennsylvania. My nursing background includes medical/oncology, medical respiratory ICU, post anesthesia care, and legal nurse consulting. While pursuing my Master’s degree I focused on pain and symptom management in the oncology population. After working in the ICU for ten years, I decided to explore opportunities in pain management. It was then, in 2000, when I became an acute pain management nurse. I have been in my current position for eight years. I received my certification in pain management in 2006.

My interest in acute pain management in the opioid tolerant patient has grown out of my own daily experience on an inpatient pain management service. As an example, my hospital has a very large orthopedic surgery program and I see many patients come in for joint replacement or back surgery who have been on large doses of long acting or short acting opioids. This makes post-operative pain management a challenge.

EC: Do you believe that problems with post-operative pain management among opioid-tolerant patients are rising?

KMC: I most definitely see the problem of lack of knowledge about opioid tolerance growing as opioids are being prescribed more frequently. In my practice when I started to notice that the number of acute pain consults was rising, I was curious to see what was behind it. I conducted a small retrospective chart review and found that 95% of the consults were for uncontrolled post-operative pain. Of that 95%, at the time of their admission, 79% of the patients were taking 20 mg or more per day of oxycodone or hydrocodone. The fact that the pain consults were increasing indicated to me that there was insufficient pain management knowledge in the primary teams, and that this lack of knowledge was leading to post-operative problems.

EC: What are some common "myths" or misinformation about pain management in the opioid-tolerant patient that you have found among health care providers?

KMC: In my experience, the most common myths about pain management in the opioid-tolerant are:

• Some practitioners believe that since the patient is on an opioid medication, they are already receiving enough of an opioid to cover them during the new acute pain episode. They do not recognize that the basal rate of pain control will not be effective when the surgery adds more pain.
• Some practitioners advise their patients to wean down or stop their opioids prior to coming into the hospital for surgery. They believe that it will then make it easier to treat their pain post- operatively. This is not true. It most likely will lead to withdrawal and increased pain, and it will not decrease the post surgical opioid requirement.
• Some practitioners believe that one agent will manage the post-op pain. They are not aware that the current standard of care for all patients with acute pain now includes a multi-modal approach. This multi-modal approach is most important for the opioid tolerant patient. It helps to minimize the escalation of opioid doses while achieving analgesia in the acute pain setting.
• Some health care providers have the misconception that all patients who are opioid tolerant are addicted to the opioids. Of course, this is not true.
  
  

EC: What works to help health care providers "unlearn" bad habits?

KMC: I think what helps providers unlearn bad habits is when they witness the outcomes from the application of the new information, or the evidenced based practice. I find that when nurses and physicians see good outcomes it is very convincing and conducive to behavior change.

EC: Is there a need for more provider education about management of the opioid tolerant patient?

KMC: There is definitely a need for more education. The professional pain management organizations are doing an excellent job of disseminating the most up to date pain care information. It is the responsibility of the recipients of this information to use it in their own practice settings and pass it on to other areas of medicine and nursing that face pain management problems. I also try to spend as much time as possible teaching other nurse specialists and physician assistants. Once they acquire and apply this new pain care knowledge, they then pass this information on to the physicians on their teams.

(End of interview) From JZ: Refer your physician(s) to the painEDU.org website for pain management information that's specifically aimed at the medical community. You might also want to order copies of the painEDU Manual, and/or the book, Managing Chronic Pain with Opioids in Primary Care. Both books are available for FREE, for patients AND doctors, at http://painedu.org/manual.asp

How to spread false information about Behcet's

I get alerts every day about articles that have been posted to the internet about Behcet's disease. Most people who get these alerts are interested in finding out any information that's available on BD -- they understandably want to hear about the latest research, or any time that Behcet's is mentioned on TV or in the newspaper. So what happens when a "humor" blog posts wrong information about BD? Even I can get fooled, at least for a couple of minutes.

I just read an entry in a blog that I've never seen before. It gives a review of a "recent" episode of the popular show House. I'm a big House fan, but haven't had time to watch the show for a couple of weeks. Since House tends to have outrageous plotlines with (occasionally) public reaction to the diagnosis, I skipped through the strange-looking plot summary description and comments on the blog to look for the Behcet's reference. I was especially interested, because House has mentioned Behcet's as a possible diagnosis in three separate episodes over the years. This is what the blog's plot summary said:

" Taub, digging from the public’s common knowledge of obscure diseases, rules that the patient has Behcet's, a disease found most frequently among Middle Eastern people; characterized by psychosis and edema (inflammation of bodily tissues); and resulting from a weak immune system...

Most medications for Behçet’s Disease are immunosuppressants, but due to Omsler’s HIV complications, he cannot take them. Instead, he must be given a riskier, somewhat poisonous drug, Colchicine. "

How many ways is this particular description wrong? Let's see.
No, Behcet's isn't "characterized by psychosis and edema", and doesn't result from a weak immune system. And for people looking for reasons NOT to take colchicine (which I've used for years), all they'd need to hear is that it's "riskier" and "somewhat poisonous." This description might apply to large doses when given by IV, not necessarily in pill form (unless you take ridiculous amounts that would keep you in the bathroom for days).

The author of the blog tries to get around the misinformation by linking the word Behcet's to its Wikipedia entry -- not always the most accurate source of information. So where do you get accurate information? Try the American Behcet's Disease Association, at http://www.behcets.com, or the section of my website that gives basic background information on Behcet's: http://www.behcetsdisease.com/basics.htm . Or subscribe to the blog that you're reading right now, Essential Behcet's.

Once I got over my first (outraged) reaction at the description of BD, I went back and re-read the whole blog...then I was embarassed that I was taken in by a "humorous" review of a TV show. But how many people will go back and take the time to re-read the original entry, and find out that it's not true? There's no way of knowing.

The internet offers a lot of good information, if you take the time to verify the source. As they used to say every week on "Hill Street Blues" (oops, I'm dating myself :-) : Be careful out there.

Article about diagnosing BD in a 16-year-old girl

This article was posted to the Medscape.com site on Nov. 26th. You may or may not have to register with Medscape to see it -- Registration is free, though, and you'll also have free access to the article afterwards:

It's Not So Sweet
By Carol Rudy, MPH, ARNP, CPNP
Journal of Pediatric Health Care
http://www.medscape.com/viewarticle/583542_print

13th International Conference on Behcet's -- May 2008

It's a short week for me due to the holiday, so this is a correspondingly short blog post!


The 13th International Conference on Behcet's Disease took place in Austria in May 2008. The Behcet's Syndrome Society in the U.K. has an 8-page summary on their website of medical information that was presented at the conference. You can access the writeup at this link:

http://www.behcets.org.uk/Resources/Behcets/Documents/PDF/13th%20ICBD%20report.pdf


Happy Thanksgiving to my fellow USers !
I'm thankful for all of the BD patients, their loved ones, and the health care providers who have made my life so worthwhile for the last 10+ years. You're my inspiration every day.
All the best,
Joanne

November 2008 medical journal abstracts (summaries) of Behcet's research studies

Best viewed in Internet Explorer --
Firefox is cutting off some of the content.





Graefes Arch Clin Exp Ophthalmol. 2008 Nov 4. [Epub ahead of print]
Ocular involvement in Adamantiades-Behçet's disease in Berlin, Germany.
http://www.ncbi.nlm.nih.gov/pubmed/18982344?dopt=AbstractPlus
Krause L, Köhler AK, Altenburg A, Papoutsis N, Zouboulis CC, Pleyer U,
Stroux A,  Foerster MH.


Rheumatol Int. 2008 Nov 4. [Epub ahead of print]
Whole thoracal spinal cord involvement in case of neuro-Behçet's disease.
http://www.ncbi.nlm.nih.gov/pubmed/18982328?dopt=AbstractPlus
Kabukçu T, Edemci S, Uçan H, Celik C, Gunes HN, Yoldas T.
Ankara Physical Medicine and Rehabilitation Education and Research Hospital,
Ankara, Turkey, tigince@gmail.com.


J Card Surg. 2008 Nov;23(6):765-768.
Cardiac and Great Vessel Involvement in Behcet's Disease
http://www.ncbi.nlm.nih.gov/pubmed/19017008?dopt=AbstractPlus
Marzban M, Mandegar MH, Karimi A, Abbasi K, Movahedi N, Navabi MA,
Abbasi SH, Moshtaghi N.
Tehran Heart Center, Medical Sciences/University of Tehran, Tehran, Iran.


Pract Neurol. 2008 Dec;8(6):348-61.
Chronic and recurrent meningitis.
http://www.ncbi.nlm.nih.gov/pubmed/19015295?dopt=AbstractPlus
Ginsberg L, Kidd D.
Consultant Neurologists, Dept of Neurology, Royal Free Hosp, London, UK


Eur J Intern Med. 2008 Nov;19(7):541-7. Epub 2008 Sep 11.
Oxidative stress: Correlation with Behçet's disease duration, activity and
severity.
http://www.ncbi.nlm.nih.gov/pubmed/19013385?dopt=AbstractPlus
Harzallah O, Kerkeni A, Baati T, Mahjoub S.


Cytokine. 2008 Nov 14. [Epub ahead of print]
Interleukin-6 in neuro-Behçet's disease: Association with disease subsets
and long-term outcome.
http://www.ncbi.nlm.nih.gov/pubmed/19010690?dopt=AbstractPlus
Akman-Demir G, Tüzün E, Içöz S, Yeşilot N, Yentür SP, Kürtüncü M, Mutlu M,
Saruhan-Direskeneli G.

Medicine (Baltimore). 2008 Nov;87(6):345-364.
A Systematic Review of the Off-Label Use of Biological Therapies in
Systemic Autoimmune Diseases.
http://www.ncbi.nlm.nih.gov/pubmed/19011506?dopt=AbstractPlus
Ramos-Casals M, Brito-Zerón P, Muñoz S, Soto MJ; the BIOGEAS STUDY Group.

Testing your vision with the Amsler grid

Keeping an eye on your vision

If you have Behcet's disease, you may or may not have problems with your vision -- as a matter of fact, approximately 25% of BD patients never have eye complications in their lifetime. But why take chances?

• Even if you've never had any vision problems, take the time to get a baseline eye exam done by an ophthalmologist. Some Behcet's-related eye problems can be "silent" at first, and not give any warning signs. Once you've had this baseline exam done, go back at least once each year to make sure that your retinas (and other eye structures) are still ok. Of course, you'll go back more often if you notice any vision problems...more about that later.
  
  
• Make sure that the person caring for your eyes has the right level of training. Opticians and optometrists aren't trained to recognize and deal with all of the possible Behcet's-related eye complications. See an ophthalmologist, preferably one that's also a uveitis specialist. If you don't know whether your eye doctor is an ophthalmologist, an optometrist or an optician, ask!
  There is a list of U.S. uveitis specialists at this page:
  http://uveitis.org/patient/specialists/us.html
  International uveitis specialists are here:
  http://uveitis.org/patient/specialists/international.html
  
  
• When to see an ophthalmologist:
  While there are many different symptoms that need to be checked by an ophthalmologist, here are some of the top problems:
  If your vision is hazy, continually blurry, or foggy
  Pain when looking at bright lights
  A red ring around the iris (colored part) of one or both eyes. The whites of the eyes may also be red.
  Double vision
  A shower of floaters, or new floaters, in your vision
  Seeing halos around lights
  If straight lines appear wavy, broken, or distorted
  A dark curtain seems to be falling across part of the vision in one eye
  Blind spots in your vision
  Pain in one or both eyes
  

(The following information is from:
http://www.eyecareamerica.com/eyecare/conditions/macular-degeneration/amsler.cfm ):

One of the easiest ways to check your vision every day is by using an Amsler grid, like the one pictured here. You may find changes in your vision that you wouldn't notice otherwise. Putting the grid on the front of your refrigerator is a good way to remember to look at it each day.

To use the grid:

1. Wear your reading glasses (if necessary) and hold this grid 12 to 15 inches away from your face in good light
2. Cover one eye
3. Look directly at the center dot with the uncovered eye
4. While looking directly at the center dot, note whether all lines of the grid are straight or if any areas are distorted, blurred or dark
5. Repeat this procedure with the other eye
6. If any area of the grid looks wavy, blurred or dark, contact your ophthalmologist immediately

And finally, learn as much as possible about uveitis, which is one of the top Behcet's-related eye complications. Here's a great guide that you can get online for free, from the Ocular Immunology and Uveitis Foundation. It's called A Guide to Ocular Inflammatory Disease, and it can be found here:

http://www.uveitis.org/kids/OIDGuide.htm

Be kind to your eyes. Take good care of them.

2008 EULAR abstracts -- now you can read them

Thanks to a reader, I just found out today that the links in my last post weren't working correctly for some subscribers, even though I was able to open them with no problem.

So... I'll give instructions on how to access the EULAR abstracts. I'm sorry for the problems -- I'll get this process down at some point.


EULAR 2008 ABSTRACTS

To access the 177 abstracts dealing with Behcet's:

Go to http://www.abstracts2view.com/eular/
Check the box on the right that says you agree with the Terms of Use, and click "Submit"
Click the tab near the top that says "Titles"
In the "Search" box at the top, type: Behcet and click "Go"
The 177 abstract links should show up in a long list over several pages. If you click on individual abstract titles, you'll get a popup with that particular abstract.

ACR and EULAR 2008 conference abstracts on Behcet's

A note about medical conference abstracts:
Abstracts from medical conferences are summaries of recent research that has been done. Abstracts are not FINAL reports. The data in some conference abstracts may not be complete, or there may even be typos or wrong information. Also, these abstracts don't always go on to be published as full articles in medical journals, either -- for a variety of reasons. They're most useful to give an idea of the types of studies that are being done now, or the different treatments that are being researched. So....don't take conference abstracts as gospel truth.

With that said, there are two sets of 2008 conference abstracts listed here, along with one full (free) article on the management of BD symptoms.


ABSTRACTS ON BEHCET'S FROM THE AMERICAN COLLEGE OF RHEUMATOLOGY (ACR) CONFERENCE, OCTOBER 2008

Effect Of Immunosuppressive Treatment On Skin Pathergy Reaction In Behcet’s Disease

Pulmonary Artery Aneurysm Screening in Patients with Behcet’s Disease

Validation of the International Criteria for Behcet’s Disease (ICBD) in Iran

Clinical Characteristics and Comparison of Treatment Outcome in Patients with Behcet’s Disease Undergoing Aortic Valve Replacement Due to Aortic Regurgitation

Randomized Control Study (single blinded) of Rituximab versus Cytotoxic Combination Therapy in Severe Ocular Lesions of Behcet’s Disease: Pilot Study (ClinicalTrial.gov ID: NCT00664599)

Large vessel involvement in Behcet's Syndrome: A Retrospective Survery


ABSTRACTS ON BEHCET'S FROM THE EULAR CONFERENCE, MARCH 2008
(European League Against Rheumatism):

There were 177 presentations at the EULAR conference that dealt with Behcet's. You can look at the full list of abstracts here, and click on the titles that sound interesting.


And finally, I posted the following article to the different online BD groups a few months ago, but it's recently come out in print. You can access it online, for free, at:
EULAR recommendations for the management of Behcet's disease

News Article: BD and First Unum Insurance

I don't even want to comment about this one.

From courthousenews.com, Nov. 12, 2008:
Balderdash, Woman Tells Unum Insurance

PHOENIX (CN) - A woman with Behcet's syndrome, an autoimmune disease that causes chronic inflammation of blood vessels, says First Unum Life Insurance denied her claim in bad faith, calling her disease a "mental illness."
Leah Bilyeu also sued the plan administrator, Morgan Stanley Long-Term Disability Plan, in Federal Court.
In addition to Behcet's syndrome, Bilyeu says she suffers from hypothyroidism, irritable bowel syndrome, gastroesophageal reflux, endometriosis, migraines, memometrorrhagia, severe pains in her back, neck, arms, hands and feet, numb extremities, weakness, fatigue, anxiety and depression.
"UNUM invoked the plan's 'Mental Illness Limitation'" to restrict her benefits to 24 months, Bilyeu says. But Behcet's syndrome is not a mental disease.
She is represented by Randolph Bachrach.

Remission in Behcet's

Are you in remission right now? It might seem like you could give a simple "yes" or "no" answer, but in a lot of cases, it's not that easy. Why not?

Because it's a matter of definition. Here's another question:

Are you in a remission because you're taking drugs right now that keep you from having flareups?
Or are you off all drugs, and still symptom-free?

And then there's the question of time. How long have you been flare-free? Two weeks? Two months? Two years? What's the minimum amount of time to be flare-free before you can say you're in remission? And are you free of all symptoms?

Over the years, I've lost count of the number of people who have told me that they're in remission -- but when I ask if they still get mouth ulcers, they say, "Every once in a while." Do their joints hurt? "Sure, but it's not too bad." I think you get the idea. I don't count that as remission.

Luckily, there are experts out there that are thinking about this whole issue of remission. There's a 120+-page supplement to the Clinical & Experimental Rheumatology journal available online, for free, about Remission in Rheumatic Diseases. Behcet's isn't the subject of any of the articles (many concentrate on rheumatoid arthritis), but one article in particular is worth downloading:

Complexities in defining remission in rheumatic diseases
Clinical and Experimental Rheumatology, 2006;24;6;43, Pg. S001-S006
T. Pincus, A. Kavanaugh, D. Aletaha, J. Smolen

Some of the questions it tackles:
1) What's the time-frame required to say that you're in remission?
2) Is remission with or without medication?
3) Can you be considered in remission if you have organ damage caused by past inflammations?
4) What about spontaneous remission?
5) Is "near remission" (where your disease is at a low level of activity) a better goal for many patients, instead of shooting for a full remission?

This article (and the whole 120+ page supplement, as a matter of fact) can be accessed for free now, but I don't know how long it will be available. I suggest taking a look at it (and downloading or printing it out) while you have a chance.

Some free internet resources for Behcet's patients

There are some good free resources about Behcet's (and related health issues) that are available online.

Questions & Answers about Behcet's Disease
A 28-page booklet about Behcet's that is published by the National Institutes of Health/NIAMS, and written with the help of Dr. Kenneth Calamia, Dr. Joseph Jorizzo, and Dr. Roy Rogers III (current and past members of the ABDA Medical Advisory Board)
You can print the booklet out in PDF form, or order a free copy (US residents only) through the mail.
A large-print version of this booklet is also available.

Behcet's Disease
An overview of Behcet's, from the Bulletin on the Rheumatic Diseases, 2004: Vol 53, No. 2
By Dr. Kenneth Calamia (Mayo Clinic, Jacksonville, FL) and Dr. Mehrdad Mazlumzadeh (Mayo Clinic, Rochester, MN)

Four different eMedicine.com articles on Behcet's, from the viewpoints of a rheumatologist, a dermatologist, an ophthalmologist, and a pediatrician:

BD: Rheumatologist
BD: Dermatologist
BD: Ophthalmologist
BD: Pediatrician

A Guide to Ocular Inflammatory Disease
A 44-page guide to uveitis, etc, created by Dr. Stephen Foster and the Ocular Immunology and Uveitis Foundation. You can print the information out from the website, or order a free copy through the mail.

An Online Tutorial about Vasculitis
Created by Medline Plus/National Library of Medicine. It's an overview, without focusing on any specific kind of vasculitis (although Behcet's is mentioned in one screen).

The following booklets/brochures deal with some health issues experienced by many (but not all) Behcet's patients. These materials have been created by the National Institutes of Health/NIAMS. Information can be printed out from the website, or you can order free copies through the mail:

Questions and Answers about Raynaud's Phenomenon
(numbness, pain/tingling in fingers and/or toes)
Questions and Answers about Sjogren's Syndrome
(creates dry eyes and dry mouth)
Questions and Answers about Fibromyalgia

The following brochures are available from the NINDS website (National Institute of Neurological Disorders and Stroke) or you can order free copies through the mail:

Headache
Pain
Meningitis and encephalitis
Neurological diagnostic tests and procedures
Peripheral neuropathy
Restless legs syndrome

Treating BD and other rheumatic diseases with rituximab (Rituxan)

Has your doctor suggested trying rituximab (Rituxan) for your Behcet's symptoms? Right now, it's only FDA-approved for treating non-Hodgkins lymphoma and rheumatoid arthritis (given in combination with methotrexate), but some doctors have been prescribing it off-label for Behcet's anyway.

So far, only one article has been published on the use of rituximab for Behcet's (to treat retinal vasculitis -- see below), but several case studies and research studies suggest that rituximab would probably be helpful for many autoimmune diseases in general. 685 rituximab clinical trials are currently registered at clinicaltrials.gov, but only eight of these studies deal with vasculitic diseases...and there's only one BD study listed.

I'm not medically trained, and can't offer advice on whether or not to try rituximab. That's between you and your doctor. Like many of the newer drugs on the market, though, it has the potential for some very serious side effects. Make sure you understand all of these side effects before agreeing to take it. For some of us, a better quality of life may be worth the risk.

Your insurance may or may not cover rituximab, and it's an expensive drug. I've read online that it can cost upwards of $14,000 for two treatments, although I don't have that information first-hand.

Some of the following articles are available online for free, and some only offer the abstract (or nothing at all except the reference) -- you'd have to buy the full article, or go to a medical library to get a copy, or ask your doctor to get it.

Treatment of retinal vasculitis in Behcet’s disease with rituximab
(with free preview of the first page of the article)
Mod Rheumatol (2008) 18:306–308
DOI 10.1007/s10165-008-0057-9
S. Sadreddini, H. Noshad
Tabriz University of Medical Sciences, Golgasht St., 51664 Tabriz, Iran
Excerpt from the abstract:
Up to now, there are some problems in treatment of the retinal vasculitis due to Behcet’s disease. We reported one patient, with visual loss due to retinal vasculitis that was resistant to prednisolone and azathioprine. Our patient was treated successfully with rituximab and his remission was sustained for 24 months of follow-up.
It is very difficult to assess the efficacy [effectiveness] of rituximab on Behcet’s disease due to the variation in treatment regimens and heterogeneity of [differences between] the few studied patients. This is among the first reports about the treatment of retinal vasculitis in Behcet’s disease with rituximab. Treatment with this drug led, in our patient, to a complete remission of ocular inflammatory manifestations and there was no relapse after the steroid tapering period. Although such reports are promising, further studies are required to evaluate the efficacy of rituximab in ocular Behcet’s disease, especially in retinal vasculitis.

Rituximab in autoimmune diseases: off-label use in clinical practice
Medscape Medical News
Janis Kelley, January 2005

Off-label use of rituximab in hospitals [in Australia]. March 2007.
Available in full online, 30 pages.

Safety of Biologic Therapy in Rheumatoid Arthritis and Other Autoimmune Diseases: Focus on Rituximab
Seminars in Arthritis and Rheumatism, In Press, Corrected Proof, Available online 12 March 2008, Roy M. Fleischmann. doi:10.1016/j.semarthrit.2008.01.001
Excerpt from the abstract:
Rituximab is approved for treating RA [rheumatoid arthritis] in patients with an inadequate response to TNF inhibitors and is under study in other indications for RA and other autoimmune disorders. The current safety profile of rituximab in RA is known from Phase II and III studies conducted pre-approval, treating approximately 750 patients, as well as from long-term extension studies with repeated therapy. Clinical trials have established that the most common adverse events [side effects] are infusion-associated reactions, seen in 29 to 40% of patients, most of which are mild to moderate and occur following the first rituximab infusion, with incidence and severity decreasing with subsequent infusions. Rates of infections and serious infections to date are within the range expected for RA patients treated with other biologic agents, but the longer term effects of B-cell depletion and the effects of repeated treatment on the risk of infections are uncertain. Information is limited for rituximab safety in other autoimmune disorders but current data do not suggest that there is a significant difference in adverse events from that previously reported.

Rituximab: a B-cell depletion therapy for dermatologic disease.

Article appears in full online, for free
Skin Therapy Lett. 2007 Jul-Aug;12(6):6-9. Review. V. Prajapati; P. R. Mydlarski, MD, FRCPC Division of Dermatology, Department of Medicine, University of Calgary, Calgary, AB, Canada

Tolerance and short term efficacy of rituximab in 43 patients with systemic autoimmune diseases.
Full article available online for free
Ann Rheum Dis 64:913–920
Gottenberg JE et al (2005)
Excerpt from the abstract:
Conclusions: Despite absence of marketing authorisation, rituximab is used to treat various refractory autoimmune diseases [autoimmune diseases that don't respond to other drugs]. in daily rheumatological practice. This study showed good tolerance and short-term clinical efficacy [effectiveness], with marked corticosteroid reduction in patients with SLE, pSS, vasculitis, and polymyositis.

Rituximab Off Label Use for Difficult-To-Treat Auto-Immune Diseases: Reappraisal of Benefits and Risks
Clinic Rev Allerg Immunol (2008) 34:103–110
Sailler, L.
DOI 10.1007/s12016-007-8020-7
Diseases covered in the article include: Wegener's granulomatosis, HCV-associated symptomatic cryoglobulinemia in patients unresponsive to anti-viral therapy, pemphigus, lupus, refractory immune thrombocytopenic purpura (ITP), dermatomyositis-polymyositis, ANCA-positive vasculitis, and primary sicca syndrome patients.

Should Rituximab be Considered as the First-Choice Treatment for Severe Autoimmune Rheumatic Diseases?
Clin Rev Allergy Immunol. 2008 Feb;34(1):124-8.PMID: 18270866
Galarz C, Valencia D, et. al.
Excerpt from the abstract:
Forty-three patients had systemic lupus erythematosus (SLE), 21 had rheumatoid arthritis (RA), 8 had Sjögren's syndrome (SS), and 2 had Takayasu's arteritis (TA). RTX [rituximab] was well-tolerated in 66 (89%) patients. In 8 patients (SLE = 3, SS = 3, RA = 2), serious side effects lead to discontinuation. The mean follow-up period was 12 +/- 7.8 (2-35) months. The efficacy of RTX was registered in 58/66 (87%) patients, of whom 36 (83%) had SLE, 18/21 (85%) had RA, 3/8 (37%) had SS, and 1 had TA. The mean time of efficacy was 6.3 +/- 5.1 weeks. A significant steroid-sparing effect was noticed in half of the patients. These results add further evidence for the use of RTX in AIRD [autoimmune rheumatic disease]. Based on its risk-benefit ratio, RTX might be used as the first-choice treatment for patients with severe AIRD.

Rituximab in rheumatic diseases
Joint Bone Spine. 2007 Jan;74(1):4-6
Saraux A, Devauchelle V, Jousse S, Youinou P.
There is no abstract available online. Speak with your doctor about getting a copy of this article.

Here is some information on the use and side effects of rituximab. Even though drugs like rituximab can be very helpful, they also have the potential to cause some very serious health issues -- make sure you know all of them before agreeing to take this (or any other) medication:
http://www.rxlist.com/rituxan-drug.htm
Mayo Clinic also has a good list of side effects
MedlinePlus information on rituximab
Information written by a non-Behcet's patient, on how to prepare for your first treatment with Rituxan

Don't be scammed by "guaranteed" BD treatments

Think of all the prescription meds that are available to treat Behcet's -- Imuran, methotrexate, Enbrel, Remicade, cyclosporine, Humira, prednisone, colchicine, Trental...it's a long list, and getting longer every year. No matter which of these medications has been prescribed by your doctor(s), though, how many of these drugs are actually guaranteed to end your BD? None.

As it stands right now, there are no prescription drugs on the market that will cure Behcet's disease. Many of them will make you feel better, and one or two may even put you in remission for a while. A cure, though, is still out of reach -- and most of us know it.

Unfortunately, some people are ready and willing to scam BD patients who are desperate to get well. I've fallen into that desperation trap myself, really wanting to think that a particular product will make me feel better. I've spent my money, tried the product (in this case, a fortified protein drink) and believed that it would help. It seemed to work for a while (the placebo response is still alive and well), but in a few weeks, I was back where I started: still sick, and with less money in my pocket.

There's actually a point to all of this. You've probably seen online ads over the last few months for the following products:

• Behctin
• Behcotab
• Cobirex

All of them are advertised as guaranteed, money-back-if-not-satisfied cures for Behcet's. It only takes 60 (or 90) days of these pills to supposedly solve your Behcet's problem for good.

When I first saw the ads for Behcotab 18 months ago, I wrote to the company and explained the Behcet's work that I do. I asked for a copy of the "proven" clinical research results, which the ad said would be available "soon." When I didn't receive a reply after a month, I wrote again. Still no response. A year and a half later, the Behcotab website still says that "a clinical study will soon be posted here," but I'm not holding my breath. The only change to the website has been a drastic drop in the price of the tablets. In April 2007, the company asked patients to buy the 3-month guaranteed cure at a price of $230 per month. Now the price is $79.99 per month.

It's still too much. Don't fall for it.

Info on kidney involvement & neuro-BD

Here are a couple of recently-released abstracts/articles.
They are very technical, but will still be useful for your doctor(s).


Renal [kidney] Behcet's disease: An update
Tekin Akpolat MD, Melda Dilek MD, Kenan Aksu MD, et al.
Seminars in Arthritis and Rheumatism, 10/31/08
doi:10.1016/j.semarthrit.2007.11.001

The aims of this study are (1) to report 33 patients with Behçet's disease (BD) having various renal manifestations, and (2) to update current data using our patients and published papers about BD and renal manifestations.

Case of the week: Neuro-Behcet
Full article available online, for free
October 26, 2008 — In this case record, Professor Metwally [Professor of neurology, Ain Shams university, Cairo, Egypt] discusses a case presented with the clinical diagnosis of Neuro-Behcet.

October 2008 research studies

Each listing links to a summary (abstract) of the article. If the whole article is available online for free, I'll provide a link to it. Otherwise you can either buy the article online, or get enough information to find it for free at a medical library...or you could bring the reference to your doctor, who should be able to get a copy for you.

When reading articles, abstracts or newspaper reports about Behcet's, please remember that every case of BD is different. Don't jump to conclusions based on what you read -- speak with your doctor for more information!


Grand Rounds: “Behcet’s Disease: What It Is, and Isn’t”
[Available online in full, for free]
A presentation at NYU by Dr. Yusuf Yazici, Director of the Behcet's Syndrome Center, NYC.
October 16, 2008

Behçets disease: Recent advances in early diagnosis and effective treatment
[Free preview of first page.]

Kenneth T. Calamia, Phaedon G. Kaklamanis

Mayo Clinic Jacksonville 4500 San Pablo Road Jacksonville FL 32224 USA
Current Rheumatology Reports, Vol. 10, No. 5, October 2008; 349-355.
This review examines important recent contributions to help the clinician more readily recognize patients with Behçet’s disease (BD) and institute appropriate care.

Clinical and demographical evaluation in pediatric behçet's disease among different age groups (in Turkey)
Gulten Karatas Sungur, Dicle Hazirolan, Ilgaz Yalvac, Pinar Altiaylik Ozer, Dilek Yuksel, Ece Turan Vural, and Sunay Duman Br. J. Ophthalmol., Oct 2008; 10.1136/bjo.2007.137141. Patient age appeared to determine the type of ocular involvement in pediatric BD. Anterior uveitis was more frequent in children under 10; children over 10 tended to have panuveitis [anterior and posterior uveitis at the same time].

Behçet's disease: comparing 3 decades of treatment response at the National Eye Institute. [Available online in full, for free]
Kump LI, Moeller KL et. al.
Can J Ophthalmol. 2008 Aug;43(4):468-72.
There was a definitive trend toward improvement in clinical outcome from the 1960s to 1990s, [due] to the introduction of newer, more potent corticosteroid-sparing agents and targeted therapy.

Budd-Chiari syndrome associated with Behçet's disease.
[Available online in full, for free]
Ghorbel IB, Ennaifer R, et al., La Rabta Hospital, 1007 Jabbari Tunis, Tunisia
Gastroenterol Clin Biol. 2008 Mar;32(3):316-20. Epub 2008 Apr 9.

Visual evoked potentials in differential diagnosis of multiple sclerosis and neurobehcet's disease. [Available online in full, for free]
Turker H, Terzi M, et al.
Tohoku J Exp Med. 2008 Oct;216(2):109-16.
P100 amplitude measured from peak to peak seems to be more reliable, and should be used in the differential diagnosis of MS and NB.

Carotid artery intima-media thickness in Behcet's disease patients without significant cardiovascular involvement. [Available online in full, for free]
Hon SN, Park JC, et al.
Korean J Intern Med. 2008 Jun;23(2):87-93.
Even though there there was no significant cardiovascular involvement in these BD patients, the carotid IMT was significantly higher in the BD patients as compared with the healthy controls.