Friday, November 27, 2009

Down but not out

Members of the online Behcet's support groups know that this hasn't been an easy year for me. Breast cancer is no fun, but it was caught early and I was able to get away with surgery and radiation treatments over the summer -- no chemo.

My cancer treatments stopped at the end of September, and the oncology staff threw confetti at me on the last day. I went back to work full-time, and I ran an online survey of BDers' experiences with different meds, for an upcoming book on BD treatments. Everything was fine, except for an occasional nagging, dry cough that I couldn't shake. By the end of October, I started having low-grade fevers and occasional chills... but those problems were listed as possible side effects of the Arimidex that I need to take for 5 years (it's an anti-cancer hormone treatment, like Tamoxifen). Then came the first week in November: My cough got a lot worse, I had trouble breathing at night, and a just-taken xray of my right lung looked like a white, fluffy cloud. After taking antibiotics for three days with no improvement, my PCP threw me in the local hospital.

They figured I had some kind of bacterial or viral pneumonia, and put me on IVs, different antibiotics and full-time oxygen. Four days later, nothing had changed, except that I needed more oxygen than when I was first admitted, I was coughing non-stop, and just getting up to go to the bathroom made it hard to breathe.

Enter the hospital's "Pulmonary Specialist," the doctor who was finally going to make it all better. He said he was going to perform a bronchoscopy to see if anything else was going on in my lung(s). A bronchoscopy involves sending a "thin" tube through your nose, between your vocal cords, and down into your lung; there's a light and a camera on the end of the cable. If you're especially "lucky," the tube also sends some saline solution into your lung and withdraws the fluid to see if there are any nasty cells lurking down there. The specialist (and his accompanying respiratory therapist) said he'd be able to do this test quickly, in my room, with little to no sedation needed. Mistake #1: Believing him. Having no experience with the test, and wanting to believe that a doctor in this hospital actually knew what s/he was doing, I allowed him to do the procedure sedation-free. They numbed my vocal cords with lidocaine and got to it. It took two assistants to hold me down. I've since read up on the procedure, and anti-anxiety meds and/or conscious sedation is standard for a bronchoscopy. I will never have this procedure done without sedation again.

The results of the bronchoscopy were interesting, though: My airway and lung looked perfectly healthy. The next diagnosis turned out to be the correct one: radiation pneumonitis. It's a form of pneumonia that can happen to a very small percentage of people who have radiation treatments for lung or breast cancer. Since my cancer was on the right side, my right lung was the one that was affected. A dry cough, low-grade fever and chills all fit the pattern, and the specialist put me on IV steroids, 60 mg four times/day. Finally, a drug that made sense to my BD brain: zap the inflammation with steroids, get better, the hell with side effects.

That's the point when any hope of meaningful doctor/patient communication went downhill (not that there was much hope at that point anyway). Yes, the steroids made an immediate difference in my breathing and coughing. I was concerned, though, that this dose might not be enough if BD was throwing some extra lung inflammation into the mix -- I'd developed a pathergy response within 30 hours of the withdrawal of two IVs, so I thought BD might be an added issue. It was "discussion time" with the pulmonary specialist. I explained more about my BD issues, and asked him to speak with my BD specialist in Boston (who had already agreed with my assessment, and wanted to suggest high-dose IV methylprednisolone over a 3-day period).

The following day? The pulmonary specialist returned, fresh from talking with my BD doc, and from a short amount of time looking up Behcet's online. He announced (incorrectly) that "Behcet's never affects the lungs, and therefore it's a non-issue." He also said that my BD doc's treatment suggestion was unnecessary overkill, and that it was time to continue the established treatment for radiation pneumonitis. My IV steroids would be cut in half that day, and in half again the next day. I would hopefully be going home on the third day with an oral prednisone taper: 60 mg the first day, 60 the second, then 50, 50, 40, 40, 30, 30, 20, 20, 10, 10, and totally off pred on the 12th day. Trying to explain Behcet's, or my BD specialist's expertise in the subject, was totally lost on the pulmonary doc. If I'd had a copy of the "Essential Guide" with me, I'd have thrown it at him and told him to read the section on pulmonary and respiratory complications.

After he left, I was visited by two other doctors who said that they were in agreement with the pulmonary doc, that Behcet's isn't a lung issue, and that there was no disagreement (which was later found to be untrue) between my BD expert and the pulmonary doctor.

Egotistical and ignorant doctors are dangerous people. By noon of that day I was determined:
  • To get out of that hospital as soon as possible, on whatever prednisone dose I was allowed, whether I was discharged on oxygen or not
  • To get out of that hospital before I came down with swine flu (which was starting to thin the ranks of the staff) or some other dangerous respiratory infection
  • To have no future contact with any of the doctors who ignored and/or belittled the advice of my BD specialist
I was finally discharged two days later (the 8th day of my hospitalization), without oxygen, and with a 12-day 60 mg tapered plan of prednisone. On the 4th day at home, on 40 mg of prednisone, my cough and breathing issues roared back again. I went online and started to use those old research skills. Gee, guess what? The "established" (rapidly tapered) treatment protocol for radiation pneumonitis that was prescribed by the pulmonary specialist was correct about dosages, but dangerously INcorrect about the timeframe. Standard treatment is to maintain a patient on 60 mg of prednisone for weeks, with the goal of totally tapering off pred over 6 months to a year.... to prevent the exact kind of relapse that I was facing after 4 days. Radiation pneumonitis that is undertreated has the potential to become incurable pulmonary fibrosis within 6 months to a year, causing a lifetime of possibly-dangerous breathing issues. Who wants that?

I immediately called my PCP and explained what was happening. She supported my reasoning, agreed to make sure that I had enough prednisone to taper at a proper rate, and will see me on Friday. At which point I'll also discuss using inhaled steroids as an alternative to the nasty side effects of oral prednisone (yes, I found an article recommending it as a valid option). It should allow me to taper a little more quickly, but still maintain my recovery.

I've spent my life advocating for Behcet's patients. And I work full-time as a medical writer for a company that helps to change peoples' health-related behaviors. I like to think that I can handle my own medical issues and problems, and I'm floored that my medical situation (and patient/doctor communication) went downhill so fast in spite of it. Being so sick didn't help, but this was a strong wakeup call.

On the plus side:
  • I know that my Boston Behcet's expert has my back. In the event that I can't get relief from this pneumonia through standard tapering and the use of inhaled steroids, I know that he'd provide the 3-day IV methylprednisolone treatment that would cut through all the crap -- quickly and without any argument. Why not do it now? I've been through the treatment before and don't want the side effects unless it's absolutely necessary.
  • In the event that I have a relapse, my local hospital is no longer an option. Boston hospitals are an hour away, but I have a much better chance of coming out in better shape than I went in.
  • And finally, I do have to say that not all interactions with the hospital staff were bad. Several nurses and other personnel spent time on my website, learning about BD. One doctor brought her medical students into my room for an impromptu lesson on Behcet's. I didn't mind any of it, and thanked everyone for being willing to learn about a rare illness.
In the end, though, I'm angry and I'm frustrated. I thought Behcet's sucked all by itself, but add breast cancer and radiation pneumonitis, and it's been the year from hell. Short of an absolute meltdown, though, I'll be at the American Behcet's Disease Association medical conference at the end of April, speaking about Behcet's and pregnancy, and selling my books (conference registration is now open at the ABDA site).

I may be down, but I'm definitely not out. Happy holidays, and see you in April.
P.S.: And for people suggesting that I file a formal complaint against the pulmonary specialist to the hospital and the Mass. Board of Registration in Medicine, yes, all options are on the table.

Wednesday, September 30, 2009

The online Behcet's Treatment Survey ends in two days (October 1st)

If you haven't filled out the online Behcet's Treatment Survey yet, please take a few minutes to do it, at:

The info from this survey will help Behcet's patients all over the world, as they try to make decisions about the best possible treatment(s) for their own situations. Once I have a chance to analyze all of the responses (which will take a while, since there are already 205 completed surveys), I'll post a general summary of the info here, as well as at the different BD support sites and organizations.

All of the statistics and comments will eventually be compiled into a book about treatments for Behcet's. It will include info on possible side effects of the different meds, an extra chapter on meds during pregnancy/nursing, and (hopefully) a chapter on pain meds, written by a pain specialist. Phew.

BTW, I'm hoping to set up a shorter, second survey in October that will only ask about topical treatments for BD skin problems (oral/genital ulcers/rashes, etc). This info will also be included in the book.

If you're one of the people who has asked questions about the survey (or other BD info) in the "comments" section, I haven't had time to read through all of the comments yet -- I'll get back to you, but it may take a while.

Thanks so much to everyone who has participated so far!
All the best,

Monday, September 21, 2009

Free online information about Behcet's disease, from the ABDA and BSS

The American Behcet's Disease Association and the Behcet's Syndrome Society (U.K.) both have a wealth of free information about Behcet's disease available on their websites.

From the American Behcet's Disease Association website:

From the Behcet's Syndrome Society website:
The Arthritis Research Campaign (ARC) brochure about Behcet's is also available online, at

And, of course, if you'd like to order hard-copy books about Behcet's, please visit my Behcet's Online Store at:  The books aren't free, but they're still useful  :-)

Final note for today:  Have you filled out the online Behcet's Treatment Survey yet? 168 other people have! It's available until October 1, 2009 at

Saturday, September 19, 2009

A new ABDA video about Behcet's disease

150 people have now registered to take the online Behcet's Disease Treatment Survey -- thank you! The Survey will be available until October 1st. I'm hoping that it will be the largest patient review of systemic medications in use in the Behcet's community. If you haven't participated yet, please take a few minutes to help by going to:

Also, please watch this NEW 10-minute video about Behcet's disease, created by the American Behcet's Disease Association. The show features interviews with Sanya Richards and other BD patients, in addition to ABDA Board members and Dr. Yusuf Yazici, Director of the Behcet's Syndrome Treatment Center in NYC.

More information is available at the the ABDA website, at

Friday, September 11, 2009

Behcet's disease treatment survey, and looking for a pain specialist

The online Behcet's Disease Treatment Survey has just registered its 100th participant. Thank you! I'm hoping that this will turn out to be one of the largest surveys of systemic medication use in the Behcet's community.

For people who haven't signed in yet (or just need a little nudge to complete the whole survey) here's the link:

Behcet's patients from ALL countries are welcome to participate. As a reminder, the survey closes on October 1, 2009.

Also, please contact me privately (you can send an email to me at the bottom of this blog post) if you know of a competent, knowledgeable, sympathetic pain specialist who understands Behcet's -- preferably in the U.S. I want to include a chapter in this upcoming treatment book about opioid (and other) prescription pain medications for severe BD-related pain.

Thanks everybody!
Joanne Z.

Sunday, September 6, 2009

Behcet's and tattoos

We know that BD patients don't all react in the same way to the same treatments and procedures. That's what makes BD so much "fun." Tattooing involves needle pricks and placing permanent ink under your skin. If you're the type of person who has overboard reactions any time you get poked with needles or get a cut on your skin (causing a pathergy reaction that leads to skin ulcers, an inflamed area, or sets off a BD flare) then I'd think twice about risking it. If you want to try anyway, SPEAK WITH YOUR DOCTOR(S) FIRST, especially your rheumatologist or other BD expert. They may have had other BD or vasculitis patients who have tried it, and may suggest or prescribe treatments in advance to prevent (or lower) any possible reactions you might have.

What some BD patients have said about tattooing:

Over the years, some BD patients have posted and/or sent comments to me about their tattoos. Their results ranged from "I got tattoos after I was diagnosed and never had a problem" to "my tattoo took a LONG time to heal," "I flared afterwards," and "Make sure you tell the person who is doing the tattoo that you have Behcet's."

What researchers have said about tattoos:

First, here's a writeup that was presented at the 2006 International Behcet's Conference in Portugal. Due to translation issues, I've done some minor editing in brackets to make the abstract a little more understandable:

\\A case of tattoo-induced eye attack and intestinal symptoms in patients with Behcet's disease

Nakano H1, Oka H1, Ohya N1, Matsuda T2, Ozaki S1
1Division of Rheumatology and Allergy, Department of Internal
Medicine, St. Marianna University School of Medicine, Kawasaki, Japan
2Division of General Internal Medicine, Department of Internal
Medicine, St. Marianna University School of Medicine, Kawasaki, Japan

[The] pathergy test is often used in patients with Behcet's disease. [A] tattoo, which is stabbed with ink in the epidermal and subcutaneous tissue of [the] skin, has a similar mechanism [to the] pathergy test. We had a case of tattoo-triggered eye and intestinal symptoms in a patient with Behcet's disease.

A 20 year-old male had a history of recurrent genital ulcer[s] and oral aphthous ulcer[s]. He had a high-grade fever and sore throat in March 2002, [followed by] severe symptoms of Behcet's disease such as aphthous ulcer[s], genital ulcer[s], acne-like eruptions, and erythema nodosum. He had HLA typing of B51, so we diagnosed him [with] Behcet's disease. But he had no eye symptoms yet.

[In] August 2002, he underwent tattoo[ing] in a wide range of his back. About 15 days after [the] tattoo experience, he had [an] eye attack of Behcet's disease for the first time. Moreover, he had high-grade fever again; therefore he [was placed on] 20mg daily prednisone therapy. In February 2003, he had stopped prednisone therapy by himself without our permission. Three months later, he had high-grade fever and severe diarrhea. He was hospitalized immediately and colon scope examination revealed multiple ulcerations in his colon, which strongly suggest intestinal symptoms of Behcet's disease. This case suggests tattoo is [a] trigger of eye attack and intestinal symptoms with Behcet's disease. We recommend prohibition of tattoo in patients with Behcet's disease, because [it] has similar mechanism [to the] pathergy test. \\

Patients who are familiar with the workings of BD might have some issues with this writeup, though: Under normal BD conditions, the timing of the "eye attack" (15 days after tattooing) doesn't seem like it should have been related to the tattoo procedure. Many BDers (myself included) who react to procedures or skin "insults" will have it happen within the first 7 days, not 2 weeks later. In addition, the intestinal symptoms with high-grade fever were far enough removed from the tattooing procedure that they could have been part of a regular (totally unrelated) flare instead. However, you'll see some information from research articles farther down in this post that will make you think twice about the timing of tattoo-related complications...even in relatively "normal" people, tattoo-related reactions have been documented up to a year after the procedure.

There aren't any other medical articles that specifically talk about tattooing in Behcet's patients, so the next option is to look at articles that talk about using a lot of needles on BD patients.

Articles about BD patients and needle reactions

Acupuncture is a good example: There are several journal articles that discuss acupuncture on BD patients. Most of the articles are from the Journal of Chinese Medicine, and they don't mention any negative effects from the procedure. As a matter of fact, they tend to say that acupuncture can be a good thing for BD patients, and in some cases can help get their systems back in balance. I think part of their success is cultural -- the Chinese have thousands of years of experience in using acupuncture for all types of health issues, so they may know how to minimize possible problems with pathergy reactions(?) ..... but that's just a guess.

There's a 2002 British case report, though, that mentions a bad reaction to acupuncture in a BD patient:

\\ P I Murray and N Aboteen
Complication of acupuncture in a patient with Behcet's disease
Br. J. Ophthalmol., Apr 2002; 86: 476 - 477.

We would like to bring to your attention a complication resulting from
acupuncture in a patient with Behcet's disease.

Case report
A 35 year old white man, who fulfilled the International Study Group
criteria for Behcet's disease, attended the Behcet's clinic at the
Birmingham and Midland Eye Centre. He complained of four red areas on
his left arm. Two days earlier he had undergone acupuncture
for what he described as "tennis elbow." These red areas corresponded
to where the acupuncture needles had been inserted. Examination
revealed these areas to be pustules that were characteristic
of a positive pathergy test.

A positive pathergy test is an important diagnostic sign of Behcet's
disease. Its prevalence varies by geographic region, being less common
in patients from Northern Europe. Nevertheless, patients with Behcet's
disease should be made aware of this potential complication if they intend
to undergo acupuncture.\\

Granted, this is only one published report -- but my gut feeling is that it could be a typical reaction for those BD patients who have pathergy responses to regular needle sticks or IV insertions.

The next thing to look at is tattooing in general, to see if there are any reports of BD-type problems in "normal" people after the procedure.

Tattoos and BD-type reactions in non-BDers

The following abstract talks about retinal vasculitis and cystoid macular edema occurring after the tattooing of a previously-healthy man. Both RV and CME can occur in BD patients:

\\ Klin Monatsbl Augenheilkd. 2004 May;221(5):424-6.
Retinal vasculitis and cystoid macular edema after body tattooing: a case report.
Moschos MM, Guex-Crosier Y.
Jules Gonin Eye Hospital, Lausanne University Hospital, Lausanne, Switzerland.

BACKGROUND: To report a case of retinal vasculitis occurring after the
placement of permanent tattoos. HISTORY AND SIGNS: A 21-year-old male
was referred to our department with impairment of visual acuity.
Permanent tattoos covered the head, body, arms and legs. The patient
was examined with ophthalmoscopy, fluorescein angiography, indocyanine
green angiography and optical coherence tomography. Systemic medical
and laboratory work-up were performed in order to exclude an
infectious agent or an inflammatory disease. He had no history of
intravenous drug abuse. THERAPY AND OUTCOME: Our patient presented
severe posterior uveitis associated with retinal vasculitis and
cystoid macular edema. Laboratory tests ruled out all diseases causing
vasculitis. HIV and B, C hepatitis tests were negative. Cystoid
macular edema and vasculitis were resolved after immunosuppressive
therapy. CONCLUSIONS: This is the first description of a retinal
vasculitis associated with cystoid macular edema in a completely
healthy individual after the placement of permanent tattoos. A
phagocytosis of tattoo pigments leading to their lysis is described in
the literature as a mechanism causing vasculitis. \\

This brings me to a report I read recently in the Journal of Clinical Rheumatology:

\\ Jolly M, Danilla M.
Tattoo: inflicted vasculitis?
J Clin Rheumatol. 2007 Feb;13(1):49.

A 52-year-old otherwise healthy lady presented with an erythematosus
rash around a tattoo on her lower leg. She had obtained the tattoo a
year earlier. The rash started as itchiness on top of the tattoo a
month after the acquisition of this tattoo. The rash was red and
progressively enlarging in the area of the red tattoo pigment. All
rheumatological workup for autoimmune disease, including systemic
vasculitis and infectious workup, was unyielding [no positive
results]. Skin biopsy revealed leukocytoclastic vasculitis.\\
[which also appears in some biopsies of skin lesions of BD patients]

Several journal articles talk about the problem of "hypersensitivity reactions" in some people who get tattoos [and after all, as BD patients, hypersensitivity is often what we're all about]. From doing extra research, it seems that most of these reactions happen (if they happen at all) from the red dyes used in permanent tattoos. I only found one abstract that gave the name of the red ink that caused a problem: azo dye Pigment Red 170 (C.I. 12475). There may be other red inks that cause a reaction too.

In an article referenced in the next paragraph, however, the authors state that "ink chemistries have evolved over the past 15 years: cadmium, mercury or cobalt have been withdrawn from most of the inks and replaced by organic colourants" [which supposedly reduces or eliminates the possible problem with ink hypersensitivity]. A response to this article, however, states that many tattoo parlors continue to use older inks, and it's important to find out what's contained in the inks before going ahead. Only one article talked about a reaction to permanent blue ink in a tattoo, and a couple talked about black ink reactions. From what I could see, most other hypersensitivity reactions are to temporary henna tattoos.

[Reference for above quote:
Kluger N, Jolly M, Guillot B. Tattoo-induced vasculitis. J Eur Acad Dermatol Venereol. 2008 May;22(5):643-4; author reply 644-5. Epub 2008 Apr 1. PubMed PMID: 18384545.]

So, if you're still considering a tattoo, what should you do?

1) SPEAK WITH YOUR DOCTOR(S) FIRST. Find out if any of the meds that you're already taking (blood thinners, prednisone, immunosuppressants, etc) might cause problems with tattooing. See if a med like prednisone, taken in advance when you're not ALREADY taking it, might help (or hurt) your chances of complications down the road. People who have been taking prednisone for a while may have problems with healing. Also, a recent medical journal comment (see Ref #6 at the end of this post) showed problems that developed in the 20-year-old tattoo of a man who was placed on etanercept.

2) Since most of the potential problems happen with red inks, find out the exact name/number of the red ink that would be used in your tattoo, and do an online search to see how frequently that type of ink shows up in med reports of hypersensitivity reactions. If the person who owns the tattoo shop is good, s/he will already know about possible problems with certain types and colors of ink.

3) BE HONEST with your tattoo artist: Explain what Behcet's is, and that you have it. S/he may never have heard of it, but might have had experience inking people with other autoimmune diseases instead, like lupus. Give the artist the right to refuse the procedure -- after all, you're not the only one at risk if something goes wrong.

4) You might want to consider having a SMALL number of dots tattooed first in an out-of-sight area, and see what happens, but TALK WITH YOUR DOCTOR BEFORE trying this: One researcher feels that this type of trial may be irresponsible, because a person who is hypersensitive may not need much ink exposure to set off a flare. Also, many of the hypersensitivity reactions don't show up immediately -- if it doesn't happen right away, within 4-6 weeks seems to be typical. But there are also reports of reactions happening up to a year after the tattoo was done.

5) It should go without saying: Make sure that the shop is clean, uses sterile equipment, etc. etc. Look up the shop at the Better Business Bureau site, too ( and see if there have been any complaints filed by other customers.

For BDers who've had tattoos done, with no problems or flareups, all of this discussion might seem like a waste of blog space. But long-time BDers (like me) who have dealt with a lot of complications over the years often choose to limit risks where we can. Tats can be beautiful works of art, but they're still elective procedures. And face it, some procedures (whether they're elective or not) don't play well with Behcet's.

When I went away on vacation with a couple of friends, we all walked into a tattoo parlor together, and two of us walked out with beautiful tats. I wasn't one of them. :-(( I found some great designs, but just couldn't bring myself to risk setting off a flare, even if the risk seemed small.

Here are a couple of general articles on tattoos and health issues:

Good luck in whatever you decide -- and if you've already had a tattoo done with (or without) complications, you might want to leave a comment below.

1) Tattoo-induced vasculitis.
Kluger N, Jolly M, Guillot B.
J Eur Acad Dermatol Venereol. 2008 May;22(5):643-4; author reply 644-5. Epub 2008 Apr 1. No abstract available.
PMID: 18384545

2) Cutaneous vasculitis following an intradermal tattoo.
Hermida MD, Otero M, Della Giovanna P, García S, Cabrera HN.
J Eur Acad Dermatol Venereol. 2007 Oct;21(9):1268-9.
PMID: 17894727

3) Tattoo: inflicted vasculitis?
Jolly M, Danila MI.
J Clin Rheumatol. 2007 Feb;13(1):49. No abstract available. Erratum in: J Clin Rheumatol. 2007 Apr;13(2):69. Danilla, Maria [corrected to Danila, Maria I].
PMID: 17278953

4) Clinical image: vasculitis in an old tattoo.
Breuer GS, Libbey CA.
Arthritis Rheum. 2000 May;43(5):1184. No abstract available.
PMID: 10817574

5) J Cosmet Dermatol. 2008 Jun;7(2):84-8.
Granulomatous tattoo reaction and erythema nodosum in a young woman: common cause or coincidence?
Wollina U, Gruner M, Schönlebe J.
PMID: 18482009

6) J Eur Acad Dermatol Venereol. 2007 Apr;21(4):550-2.
Granulomatous tattoo reaction in a patient treated with etanercept.
Bachmeyer C, Blum L, Petitjean B, Kemiche F, Pertuiset E.
PMID: 17373994

7) Kluger N, Jolly M, Guillot B.
Tattoo-induced vasculitis.
J Eur Acad Dermatol Venereol. 2008 May;22(5):643-4; author reply 644-5. Epub 2008 Apr 1. PubMed PMID: 18384545

Wednesday, September 2, 2009

Participate in the new Behcet's disease treatment survey

Behcet's patients often ask me how they can help other BDers. Well, there's a project on my plate right now that ANY BD patient can participate in: a new survey about the treatments and medications that BD patients are currently using. Your survey responses will help to create a booklet with patients' "reviews" of approximately 30 Behcet's-related medications and treatments.

Why am I doing this?

For one thing, the "Essential Guide to Behcet's Disease" was published in 2003; while it only came out six years ago, six years can make a big difference in terms of available treatment options. For example, I wanted to see how useful/safe the newer anti-TNF drugs actually are, down in the trenches.

In addition, I often receive questions about BD treatments, through my website. For example:

  • Which drugs work well?
  • How will I feel when I take this drug?
  • Does anyone else have the side effects that I get when I take my medicine?
  • Will the newer anti-TNF medications help me?

I felt that the time was right for an updated, patient-friendly resource on Behcet's medications... within limits, of course: This new booklet is NOT meant to replace a doctor's guidance!

The online Behcet's disease treatment survey isn't meant to be a rigorously-designed piece of scientific research, either. It's a snapshot of patient experiences at one point in time, like the survey that I did in 2006 on Pregnancy in Behcet's patients in the U.S. I doubt that the results will be published in a medical journal, but that doesn't make the collected information any less valuable for patients.

If you'd like to find out more about this survey (and hopefully participate in it, too) it's available until October 1 at this location:

Hope to see your survey answers soon!
All the best,
Joanne Zeis

Saturday, August 29, 2009

Clinical trial results: Low-dose interferon alpha lozenges to treat Behcet's disease

Some Behcet's patients will probably remember the excitement several years ago about low-dose interferon alpha oral lozenges in the treatment of BD symptoms. The lozenges were created by Amarillo Biosciences in Texas (trade name Veldona), but the product needed to undergo clinical trials for use in treating BD. AmarBio already had good results in trials of treating COPD, idiopathic pulmonary fibrosis, and warts in HIV-positive patients, and are also banking on Veldona being very useful in treatment of flu epidemics.

Veldona modulates (evens out) immune system responses, instead of suppressing the immune system like a lot of other BD treatments.

Many BD patients in the U.S. have been able to get the lozenges through a "compassionate use" request, but it hasn't been easy -- especially once the manufacturing process settled in Canada, and U.S. patients faced the drugs being confiscated at customs during shipment if any part of the prescribing paperwork was left out (which happened enough to become an issue for some patients a while back).

People who have been helped by the lozenges swear by them (reducing oral/genital ulcers and other overall BD symptoms, with few to no side effects). Like all treatments, though, they haven't worked for everybody. Results are especially poor if people use the lozenges when they're already immunosuppressed by taking drugs like Imuran, methotrexate, etc., or if they're taking anti-TNF meds (Enbrel, Remicade), or using NSAIDS like ibuprofen or Naproxen. That knocks out a lot of BDers from the start. I've never personally used the lozenges, but might have tried harder to get them if prescriptions could be filled in the U.S. instead of Canada.

Regardless, results of the first clinical trial of the lozenges in the treatment of Behcet's were just published yesterday in the journal "Rheumatology."
[Low-dose natural human interferon-{alpha} lozenges in the treatment of Behçet's syndrome
Hasan Kiliç, Hasan E. Zeytin, Cengiz Korkmaz, Cem Mat, Ahmet Gül, Fulya Cosan, Ayhan Dinç, Ismail Simsek, Necdet Süt, and Hasan Yazici
Rheumatology. Published 28 August 2009, 10.1093/rheumatology/kep237]
The abstract can be viewed here:

The trial took place in Turkey, under the watchful eye of Hasan Yazici, MD. Unfortunately, BD patients who have been hoping for good results will be disappointed: There was no difference between using the lozenges and being given a placebo, in the number/size of oral ulcers in BD patients.

HOWEVER, the end of the article included a hopeful message for U.S. patients, suggesting that the lozenges may eventually be tested in a clinical trial at the NYC Behcet's Syndrome Center run by Dr. Yazici's son (Dr. Yusuf Yazici):

"Disease features of BS can show distinct geographical variation and there has been an indication that patients from New York with ethnic origins from non-endemic areas had milder disease [19]. We are aware that there are anectodal reports from patients from North America who claim benefit from off-label use of IL. Therefore, there might still be case for yet another controlled study with this agent limited to this region."

U.S. patients who'd like more information about getting prescription access to the lozenges should go here:
[If this link is not active, the ENTIRE link must be copied/pasted into your browser, from "http" at the start, through "firefox-a" at the end.)

Tuesday, August 4, 2009

Stay away from "The 21st Century Ultimate Medical Guide to Behcet's Syndrome"

It's rare that a Behcet's resource has made me this angry (unless you consider my negative review of "The Official Patient's Sourcebook on Behcet's Disease: A Revised and Updated Directory for the Internet Age" by Icon Health Publications.)

What do you get for your $25? One CD that's supposedly filled with Behcet's-related information, and a second CD with the company's "Medical Encyclopedia." Let's look at the BD-related CD first. It contains 4 main files:

  1. "Behcet Syndrome": This section is 244 pages long, which sounds great until you take a closer look. Less than 10 of these pages include direct information on Behcet's. Most of the pages are screenshots: lists of links to websites found by searching the government's database. And many of the links lead to info for vasculitic diseases that are NOT Behcet's. What's in the other 234 pages of this section? There are 175 pages of screen shots of clinical trial listings, directly pulled from the database. Only FOUR out of the 38 clinical trials that are listed directly relate to Behcet's. The remainder of the listed clinical trials are for "vasculitis" studies, and these studies weren't screened in advance before being dumped into this document. What else explains including studies where the "Exclusion Criteria" for the study is "Behcet's Disease"?? (i.e., if you have Behcet's, you CAN'T join this clinical trial).

    What's in the other 50 or so pages of this section? More than a few blank screen shots, and screen shots of pages from other U.S. government health-related websites (primarily NINDS).

  2. The second section of this CD is a 75-page "Guide to Leading Medical Websites." Each page is a screen shot of the home pages of different health-related sites: WebMD, MedlinePlus, etc.

  3. The third section is 3405 pages directly pulled from the NIAMS website (the National Institute of Arthritis and Musculoskeletal and Skin Diseases). It includes all of the NIAMS health booklets that are already free to the public online -- including NIAMS' free publication, "Questions and Answers about Behcet's Disease." Go to this link to get it yourself:

  4. The fourth section is an unbelievable waste of disc space for people looking for BD info. It's 13,635 pages directly pulled from the NIGMS website (National Institute of General Medical Sciences). Out of morbid curiosity, I did a search on "Behcet's" in this section. No surprise -- Behcet's isn't mentioned on any of the pages.
What about the second CD? (The "Medical Encyclopedia"?)

Once again, there's a whole CD filled with screen shots from government websites: specifically from the National Institutes of Health, the National Cancer Institute, and the Centers for Disease Control and Prevention. I'm not saying that info from these sites isn't valuable (it is), but you can get all of it, for free, by going to these websites yourself.

I'm amazed that PM Medical Health News (who put this CD set together) says that the product is meant for patients, physicians, and nurses. Smart patients will stay away from this CD, and physicians and nurses have absolutely no need for the "Ultimate Medical Guide to Behcet's Syndrome": They already know how to find all of this information on their own.

BTW, I also suggest staying away from this CD's sister product, "The Empowered Patient's Complete Reference: Behcet's Syndrome," which I don't expect to be any better than this one.

One last comment -- I clicked on the "Author" link at the top of's listing for this CD set (the author/publisher is PM Medical Health News). It brought me to 950+ very similar CDs created by this publisher, on a huge variety of health issues and diseases. I'm guessing that all of these CDs are almost identical. Like Icon Health Publications, PM Medical Health News has figured out how to capitalize on desperate patients who are looking for information about their rare illnesses.

On the site, I gave this CD set one star, but only because "zero" stars wasn't an option.

Wednesday, July 29, 2009

Behcet's and cancer

If you subscribe to this blog, you might have noticed a dropoff in my posts. I've been a little busy: A couple of months ago I was diagnosed with breast cancer (invasive ductal carcinoma), but thankfully it was caught early. After weeks of trying to juggle procedures/surgeries along with my full-time job and long commute, though, the stress level became ridiculous. I'm now on medical leave from work, undergoing daily radiation treatments (M-F) .

So, does having Behcet's increase your risk of developing cancer? Does it increase your risk of developing breast cancer? I was especially curious about that, since I'm aware of two other BD patients who've been treated for breast cancer in the last 2 years. If I conducted an online poll, there's a chance of uncovering some other women in the same situation, too.

Regardless, right now there's not much published research on BD and breast cancer -- or on BD and other cancers, either. Is my cancer related to having BD, or could it be due to the immunosuppressant meds that were prescribed for treatment years ago? Or is it due to my age? After all, I'm over 50, and women my age have a 1 in 8 chance of developing breast cancer anyway. I hope more research is done in this area.

Here are some excerpts from recent articles -- full copies of these articles can be ordered through PubMed, by asking your doctor, or by visiting a local medical library:

Behçet's disease associated with malignancies. Report of two cases and review of the literature.
Clin Exp Rheumatol. 2005 Jul-Aug;23(4 Suppl 38):S35-41.
Kaklamani VG, Tzonou A, Kaklamanis PG.

"We performed a MEDLINE search from 1970 through 2003, as well as a search in the proceedings of international conferences for cases of malignancies associated with Behçet's disease.
RESULTS: Two of our 128 patients (1.5%) with Behçet's disease were found to have solid tumors. One male had lung cancer and the other female had kidney cancer...In the world literature 112 cases of malignancies associated with Behçet's disease were found: Sixty five cases were of male patients and 46 of female with 1 case of unknown gender. The solid malignancies associated with Behçet's disease included cases of bladder, breast, uterus, thyroid and stomach cancer, whereas haematological malignancies included leukemia, myelodysplastic syndrome, lymphoma, multiple myeloma, Hodgkin's disease and lymphosarcoma. The treatment administered in these patients with their disease is also reported.
CONCLUSION: ...There is discrepancy in the world literature and the possibility of development of malignancies in Behçet's disease patients should not be ignored."
PMID: 16273762

Here's another report

Malignancy in Behçet's disease: a report of 13 cases and a review of the literature.
Clin Rheumatol. 2001;20(4):239-44.
Cengiz M, Altundag MK, Zorlu AF, Güllü IH, Ozyar E, Atahan IL.
Hacettepe University Faculty of Medicine, Ankara, Turkey.

"Between 1986 and1999, 400 patients were diagnosed as having BD in Hacettepe University Hospitals. Thirteen patients (3.25%) developed [cancer] within a median follow-up time of 9.8 years. Solid tumors were diagnosed in 10 patients and haematological or lymphoid malignancies in three. Surgery was performed in seven patients, whereas radiotherapy [radiation treatment] was applied in six, and chemotherapy in eight. A literature review revealed 27 cases of BD associated with malignancies, mostly lymphoid or haematological.

Ten of our cases were solid tumors, and to our knowledge most of these are the first reported cases of specific malignancies [occurring together] with BD. Treatment-related morbidities [complications] were wound infection ... in one patient (1/7) and [radiation]-related [problems] in three (3/6) patients in a median follow-up time of 2 years. Solid tumors in addition to lymphoid and haematological malignancies are also seen during the course of BD. Radiation therapy may cause severe late [problems] in the presence of BD. Chemotherapy and surgery are fairly safe for the treatment of malignancies in BD patients."
PMID: 11529628

If you're interested in doing some more research on your own, here are some abstracts that you might want to read:

1) Chargari C, Kirova YM, Fourquet A, Campana F.
Severe acute radiation-related skin toxicity in a breast cancer patient with Behçet's disease.
Radiother Oncol. 2009 Apr;91(1):139. Epub 2008 Nov 17.
PubMed PMID: 19014876. (no abstract available)

2) Kammori M, Tsuji E, Ogawa T, Takayoshi N, Kurabayashi R, Takubo K, Kaminishi M.
The pathological findings of vasculitis simultaneously occurring with carcinoma, invasive breast carcinoma in a patient with Behçet's disease.
Available online for free at:
Breast Cancer. 2006;13(4):378-81.
PubMed PMID: 17146167.

3) Soleto MJ, Marcos L.
Behçet's disease involving the breast.
Eur Radiol. 2002 Dec;12 Suppl 3:S98-S100. Epub 2002 Jun 19.
PubMed PMID: 12522614.

4) Dündar SV, Sivri B, Gököz A.
Vasculitis of breast in Behçet's disease--a case report.
Angiology. 1988 Oct;39(10):921-4.
PubMed PMID: 3177958.

5) Souabni L, Elleuch M, Amira C, Sellami S.
Malignant lymphoma of the tonsil in a patient with Behçet's disease.
Joint Bone Spine. 2008 Oct;75(5):616-8. Epub 2008 Sep 18.
PubMed PMID: 18804394.

6) Bozi E, Katoulis AC, Stavrianeas NG.
Association of Behcet's disease with hematologic malignancies.
Int J Dermatol. 2007 Mar;46(3):333-4. Review.
PubMed PMID: 17343601.

7) Ono Y, Yamada M, Kawamura T, Ito J, Kanayama S, Katayama Y, Okusawa E.
Central nervous system malignant lymphoma associated with Behcet's disease. Case report.
Neurol Med Chir (Tokyo). 2005 Nov;45(11):586-90.
PubMed PMID: 16308519.

8) Aessopos A, Alatzoglou K, Korovesis K, Tassiopoulos S, Lefakis G,Ismailou-Parassi A.
Renal pseudotumor simulating malignancy in a patient with Adamantiades-Behçet's disease: case report and review of the literature.
Am J Nephrol. 2000 May-Jun;20(3):217-21.
PubMed PMID: 10878405.

9) Pretorius ES, Hruban RH, Fishman EK.
Inflammatory pseudotumor of the terminal ileum mimicking malignancy in a patient with Behçet's disease. CT and pathological findings.
Clin Imaging. 1996 Jul-Sep;20(3):191-3.
PubMed PMID: 8877172.

Friday, May 15, 2009

Two new articles: Treating BD with contraceptives, and an update on different treatments

I just came across two new articles dealing with the treatment of Behcet's symptoms. The first one is available online for free; the second article is only available as an epub online purchase (it hasn't been published in hardcopy yet), although I'm providing the abstract below for educational purposes, along with a link to purchase the full article on your own.

  1. Managing Behcet's disease: An update on current and emerging treatment options
    P LA van Daele, JH Kappen, PM van Hagen, J AM van Laar
    Therapeutics and Clinical Risk Management, 2009:5 385-390.
    Article is available in full, for free, at:

  2. Behcet's disease: Remission of patient symptoms after oral contraceptive therapy
    Oh SH, Kwon JY, Lee JH, Han EC, Bang D.
    Clinical and Experimental Dermatology. 2009 May 5. [Epub ahead of print] (abstract)
    You can purchase this 3-page article for $29.95 at the Wiley InterScience web site through this link:

    [JZ: Note: This is a case report of ONE patient who was successfully treated with oral contraceptives. The treatment may or may not work for anyone else; using contraceptives made no difference in my own flares. I know many women whose flares are related to their menstrual cycles, though, so it's probably worth discussing it with your doctor(s).]

    Summary: We report a patient with Behcet's disease (BD) who went into remission after administration of oral contraceptives. About 2 years after the diagnosis of BD, she developed dysfunctional uterine bleeding with menometrorrhagia, during which oral and genital ulcers and erythema nodosum-like lesions persisted without remission. The oral contraceptive that was prescribed to control her irregular menstruation also suppressed outbreaks of ulcers and erythema nodosum-like lesions. This case suggests that sex hormones might be considered as one of the aggravating or inducing factors in BD.

Sunday, May 3, 2009

Summaries of two articles about BD in the U.S., and six FREE Behcet's articles

There aren't very many published research studies that specifically talk about Behcet's patients in the U.S. Summaries of two recent studies are provided below. You may be able to get the full articles from your doctors, or at a local medical library.

After these summaries, I'm also providing links to six free, full-text medical journal articles about Behcet's that have been published in the last 1-2 months.

BD in the United States:
  1. Arthritis Rheum. 2009 Apr 29;61(5):600-604 [Epub ahead of print]
    Epidemiology and clinical characteristics of Behcet's disease in the US: A population-based study.
    Calamia KT, Wilson FC, Icen M, Crowson CS, Gabriel SE, Kremers HM.

    The bottom line: This study looked at 13 Behcet's cases in Olmsted County, Minnesota (home of the Mayo Clinic) over 45 years (1960-2005). All patients were 18 and older; 11 of them met the International Study Group (ISG) criteria for Behcet's, and 69% of the patients were white. One hundred percent of them had oral ulcers, 62% had genital ulcers, 46% had erythema nodosum, and 54% had papulopustular lesions. There were ocular lesions in 8 patients, vascular complications in 3 patients, and central nervous system involvement in 3 patients. "The prevalence of 5.2 per100,000 population is similar to estimates reported in Western countries, but lower than that in countries along the Silk Road."
    PMID: 19405011

  2. Clin Exp Rheumatol. 2008 Jul-Aug;26 (4 Suppl 50):S110-3.
    Behcet's syndrome patients have high levels of functional disability, fatigue and pain as measured by a Multi-dimensional Health Assessment Questionnaire (MDHAQ).
    Moses Alder N, Fisher M, Yazici Y.
    Behçet's Syndrome Evaluation, Treatment and Research Center, New York University Hospital for Joint Diseases, New York, NY, USA.

    The bottom line: This study was really done to find out if a certain health questionnaire (the MDHAQ) was good to use for Behcet's patients -- but it also came up with some good information on Behcet's-related pain levels, morning stiffness, fatigue, and some other health issues. The researchers compared the answers of 129 Behcet's patients with the answers from 116 patients who had early rheumatoid arthritis. It turns out that BD patients had pain levels that were similar to the amount of pain felt in early rheumatoid arthritis, but BD patients had higher amounts of "functional disability" [a health condition that limits his or her ability to go outside the home alone or causes difficulty in taking care of personal needs such as bathing, dressing, or getting around inside the home], and higher amounts of fatigue than the RA patients. Behcet's patients also felt that they had more overall health issues and active disease than the RA patients. Behcet's patients who also had arthritis had higher pain/disability/fatigue scores than BD patients who didn't have arthritis.
    PMID: 19026127

FREE medical journal articles on Behcet's, published March-May 1, 2009:
  1. Beyranvand MR, Namazi MH, Mohsenzadeh Y, Assadpour Piranfar M.
    Acute myocardial infarction [heart attack] in a patient with Behcet's disease.
    Arch Iran Med. 2009 May;12(3):313-6.
    PubMed PMID: 19400613.

  2. Rahil AI, Errayes M, Salem KM.
    Cerebral venous thrombosis as the initial presentation of Behcet's disease.
    Chang Gung Med J. 2009 Mar-Apr;32(2):220-3.
    PubMed PMID: 19403013.

  3. Takahama M, Yamamoto R, Nakajima R, Tada H.
    Successful surgical treatment of pulmonary artery aneurysm in Behcet's syndrome.
    Interact Cardiovasc Thorac Surg. 2009 Mar;8(3):390-2. Epub 2008 Dec 8.
    PubMed PMID: 19064583.
    Karatepe O, Ziyade S, Ugurlucan M, Gasparyan AY.

  4. eComment: treatment of pulmonary artery aneurysm in Behcet's disease - few things can make big differences.
    Interact Cardiovasc Thorac Surg. 2009 Mar;8(3):392.
    PubMed PMID:19223315.

  5. Altintaş E, Senli MS, Polat A, Sezgin O.
    A case of Behcet's disease presenting with massive lower gastrointestinal bleeding.
    Turk J Gastroenterol. 2009 Mar;20(1):57-61.
    PubMed PMID: 19330737.

  6. Yi SW, Cheon JH, Kim JH, Lee SK, Kim TI, Lee YC, Kim WH.
    The prevalence and clinical characteristics of esophageal involvement in patients with Behcet's disease: a single center experience in Korea.
    J Korean Med Sci. 2009 Feb;24(1):52-6. Epub 2009 Feb 28.
    PubMed PMID: 19270813; PubMed Central PMCID:PMC2650985.

Sunday, April 12, 2009

Cataract surgery and Behcet's

If you have Behcet's-related eye involvement with inflammation that's lasted for months or years, OR

If you've had NO Behcet's eye involvement, but have been using prednisone and/or other corticosteroid-based meds for a long time, then this post is for you. Here are the facts:
  1. Long-term eye inflammation can create a cataract in the affected eye(s) -- whether you have Behcet's uveitis or some other inflammatory eye disease.

  2. And prednisone use can also cause cataracts in BOTH eyes, even if you have uveitis in only one of those eyes. As a matter of fact, prednisone use can cause cataracts in both eyes even if you've never had uveitis.
It's not a great situation. What are you supposed to do if cataracts start to affect your vision? Some surgeons will refuse to do cataract surgery on Behcet's patients, either because they've never had a BD patient before, or they're afraid of complications from the surgery (and/or possible liability). And some surgeons will tell you that the operation isn't a problem for Behcet's patients; these are the surgeons to be worried about. Ask how many BD patients they've operated on, and what their results were.

One way or another, though, if your vision has gone downhill due to a cataract, it's time to look for solutions.

I've been through two cataract removals and IOL (intraocular lens) implants. One of the surgeries was very complicated, and required creating a new pupil at the same time as the cataract removal (it's a long story). Remembering that I'm not medically trained, and that your doctor(s) are the best source of information, here are my suggestions:
  1. Cataract surgery in Behcet's patients should only be done by a surgeon who has experience in handling the potentially-explosive complications that can come with eye surgery in BD patients. Find out how much experience your surgeon has in this area, how many Behcet's cataract surgeries s/he has done, and how experienced s/he is in using immunosuppressive meds to handle serious post-surgical inflammation. I was in excellent hands with my surgeon (Dr. Foster, at MERSI in Boston) but several other surgeons I'd seen first had refused to do the operation because of the possible complications. Keep in mind though, that even with a good surgeon, no one can guarantee what the outcome will be.

  2. Cataract surgery should only be done when the affected eye has been totally quiet for at least 3 months. No cells in the vitreous, and no evidence of inflammation.

  3. The outcome of the surgery (how well you'll be able to see) really depends on how much damage has already happened to your retinas/optic nerve/etc. Replacing a cataract with an IOL will only you give good vision if your retina is still in good shape. If your cataract is very dense and your vision is already poor, it may be hard for your ophthalmologist to know what's going on with your retina(s) before the surgery. There were a lot of doubts about whether an IOL would improve the vision in one of my eyes since I had so much retinal scar tissue, but it turned out very well. Of course I didn't know for sure, though, until the bandages came off the day after surgery. And then it was like a miracle -- I went from counting fingers and basic light/dark vision, to 20/60 overnight...and it kept improving over the following weeks till it reached 20/20 -- where it is today (10+ years later :-)

  4. If you have cataracts in BOTH eyes, you'll need two separate surgeries: If there are complications during the first surgery and you lose some vision as a result, you'll still have one "good" eye left.

  5. Patients with Behçet's uveitis should receive immunosuppressive/steroid meds before any eye surgery to reduce the chance of inflammation after the operation.
Dr. Foster has a couple of short background articles on his website that you might find helpful. You can see them here:
There are also several medical journal articles about cataract removal in BD patients. If your surgeon is good, s/he should already know all of this information (and more). If you'd like to read the summaries (abstracts), I've included the links below:
  1. Curr Opin Ophthalmol. 2009 Jan;20(1):42-5
    Cataract surgery in the setting of uveitis
    Van Gelder RN, Leveque TK.
    The basics:
    If the special challenges of cataract surgery for uveitis patients are taken care of, excellent vision can be achieved in most patients. Recent research shows high rates of uveitis flareups after surgery in some diseases, though, suggesting that medications should be prescribed in advance of the surgery to prevent flareups afterward. Although excellent outcomes can be achieved with many types of intraocular lenses, several recent studies have suggested that complications after surgery may be lower in patients who receive intraocular lenses made of acrylic instead of other materials.
    PMID: 19077828

  2. J Cataract Refract Surg. 2007 Feb;33(2):305-9
    Phacoemulsification cataract extraction and intraocular lens implantation in patients with uveitis.
    Kawaguchi T, Mochizuki M, Miyata K, Miyata N.
    The basics: Cataract removal and IOL implant in patients with uveitis was satisfactory. Patients with Behçet's- related eye inflammation, however, appeared to have a higher risk for complications, and therefore worse outcomes, than patients with other types of uveitis.
    PMID: 17276275

  3. Ophthalmic Surg Lasers Imaging. 2004 May-Jun;35(3):215-8.
    Phacoemulsification cataract extraction and intraocular lens implantation in patients with Behçet's disease.
    Berker N, Soykan E, Elgin U, Ozkan SS.
    The basics: Vision got better in 29 eyes (72.5%) after surgery and was 20/40 or better in 18 eyes (45%). Vision got worse in 7 eyes (17.5%), resulting in vision of 20/400 or worse. The most frequent complication after surgery was posterior capsular opacification [a cloudy lens], which developed in 15 eyes (37.5%). Other complications were posterior synechiae formation [a pupil that won't move, because the iris is stuck to the lens of the eye] in 7 eyes (17.5%), severe inflammation in 5 eyes (12.5%), cystoid macular edema in 5 eyes (12.5%), epiretinal membrane [a membrane over the retina that can cause distorted vision] in 3 eyes (7.5%), and optic atrophy [an optic nerve that's wasting away] in 2 eyes (5%).
    PMID: 15185789

  4. J Cataract Refract Surg. 2002 Feb;28(2):316-20.
    surgery in patients with Behçet's disease.

    Kadayifçilar S, Gedik S, Eldem B, Irkeç M.
    The basics: In patients with Behçet's disease, inflammation after surgery was mild when surgery was performed after at least 3 months of no inflammatory signs. The vision after surgery depended on how much damage had already been done to the back of the eye from previous inflammations.
    PMID: 11821216

  5. Ophthalmologica 2001;215:179–182
    Ocular attacks after phacoemulsification and intraocular lens implantation in patients with Behcet's disease
    Toshihiko Matsuoa, Makiko Takahashia, Yasushi Inoueb, Kuniaki Egic, Yasunori Kuwataa, Akihiro Yamaokaa
    The basics: The development of inflammation after cataract surgery was related to inflammation in the affected eye at any point within 1 year before the surgery. The authors recommend a minimum 6-month inflammation-free time period before removing a cataract and implanting an IOL.
    PMID: 11340387

  6. Acta Ophthalmol Scand. 2000 Dec;78(6):680-3.
    The results of cataract extraction and intraocular lens implantation in patients with Behçet's disease.
    Süllü Y, Oge I, Erkan D.
    The basics: For patients with chronic Behçet's uveitis who had cataract removal and IOL implants, the patients had low vision after surgery due to problems that already existed before the operation: optic atrophy, inflammation that caused scar tissue, or macula edema.
    Full article available here:
    PMID: 11167232
And finally, here's a general overview article on BD-related eye problems at "Update on Ocular Behcet's Disease"

I've had no regrets about either of my cataract surgeries. After 30 years of Behcet's-related eye involvement, I'm still able to see, drive, work, and handle my life on a day-to-day basis. Not everyone with BD is that lucky (and my situation could change tomorrow) but I credit excellent eye care for my good vision. If you haven't seen a uveitis specialist yet, please do it! There's a list of U.S. and international uveitis specialists here:

All the best,
Joanne Z.

Tuesday, March 24, 2009

Upcoming Behcet's Conferences (2010)

Going to Behcet's conferences is a great way to meet other patients, to get some much-needed support, and to learn from doctors who actually know what they're doing.

There are two Behcet's conferences coming up in 2010: One will be in the U.S., and the other will be in London. I'm offering some info about them now, so you can start saving up for one of the trips if you think you might want to go. Basic expenses usually include a registration fee for the conference (typically around $350+ dollars, which gets you into all the presentations and some meals over several days), extra money for airfare, and nightly lodging at the hotel. I'm hoping to go to the U.S. conference, but with the economy the way it is these days, I have to start setting some money aside every week to make it possible.

1) The American Behcet's Disease Association Medical Conference: April 23-25, 2010 in Orlando, FL
The ABDA is in the process of planning the conference , contacting speakers, and choosing the hotel. They're also working on getting approval to offer CME credits for healthcare people who attend. According to Sandy McElgunn, the ABDA president, some of the information may be finalized at their next Board meeting in April. Once I have more information, I'll post it here.

2) The 14th International Conference on Behcet's Disease (for doctors and other medical professionals), and the 6th Patients' Convention on Behcet's: July 8-10, 2010 in London.

Here is the announcement that I received about the two conferences from the International Society for BD. (The medical conference and the patients' conference are usually held in separate areas of the same hotel, so that some of the doctors are able to do presentations for each one.)

"On behalf of the United Kingdom Behcet's Disease Forum and the United Kingdom Behcet's Syndrome Society, we have great pleasure in announcing the 14th International Conference on Behcet's Disease, to be held in London from 8th-10th July 2010 under the auspices of the International Society for Behcet's Disease.

The venue of the Conference will be the Queen Mary University Conference Centre at Mile End, London E1. The venue is within five minutes’ walk from the Mile End Underground Station, and a short taxi ride from hotels situated at St. Catherine’s dock near Tower Bridge.

The Conference Steering Committee is planning to provide an excellent scientific programme, aiming at bringing new developments in basic and clinical science to bear on the specific issues of Behcet’s Disease (BD). Topics to be covered will include Immunology of BD, Vasculitis in BD, Genetic Basis of BD, Regional Inflammation, and Paediatric BD. The programme will also include debates on topics of current interest or controversy.

Besides these main activities, you will be able to enjoy the rich cultural life and tourist attractions of London and the rest of the UK. July is at the peak of the English summer, offering very pleasant weather with a temperature range of 14-24 C.

Professor Dorian Haskard
United Kingdom Behcet’s Disease Forum
Honorary President of the 14th International Conference

Dr. Graham Wallace
United Kingdom Behcet’s Disease Forum
Honorary General Secretary of the 14th International Conference

Dr. Colin Barnes
United Kingdom Behcet’s Disease Forum
International Affairs Secretary of the 14th International Conference "

Wednesday, March 11, 2009

Six more abstracts & 4 free articles about Behcet's

1)  Korean J Gastroenterol. 2009 Feb;53(2):106-10.
Serial Episodes of Gastric and Cecal Perforation in a Patient with Behcet's
Disease Involving the Whole Gastrointestinal Tract: A Case Report.

Shin DY, Cheon JH, Park JJ, Kim H, Kim TI, Lee YC, Kim NK, Kim WH.
Full article is available for free at:

2) Ann Intern Med. 2008 Aug 19;149(4):284-6.
Resistant Behçet disease responsive to anakinra [Kineret].
Botsios C, Sfriso P, Furlan A, Punzi L, Dinarello CA.
Full article is available for free at:

3) Headache. 2009 Mar;49(3):467-70.
The Presentation of Headache in Neuro-Behçet's Disease: A Case-Series.
Kale N, Agaoglu J, Icen M, Yazici I, Tanik O.
Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN, USA.

4) J Korean Med Sci. 2009 Feb;24(1):52-6. Epub 2009 Feb 28.
The prevalence and clinical characteristics of esophageal involvement in patients
with Behçet's disease: a single center experience in Korea.

Yi SW, Cheon JH, Kim JH, Lee SK, Kim TI, Lee YC, Kim WH.
Full article is available for free at:

5) Clin Exp Immunol. 2008 Dec 11. [Epub ahead of print]
Clinical Immunology Review Series: An approach to the patient with recurrent
orogenital ulceration, including Behçet's syndrome.

Keogan MT.
Department of Immunology, Beaumont Hospital, Dublin, Ireland.

6) Clin Exp Dermatol. 2009 Mar;34(2):151-5.
Classifying patients with Behçet's disease for disease severity, using a
discriminating analysis method.

Polat M, Vahaboglu G, Onde U, Eksioglu M.
Department of Dermatology, Medical Faculty, Abant Izzet Baysal University, Bolu,

7) Lancet Neurol. 2009 Feb;8(2):192-204.
Neuro-Behçet's disease: epidemiology, clinical characteristics, and management.
Al-Araji A, Kidd DP.
Neurology Department, University Hospital of North Staffordshire, Stoke-on-Trent,

8) Clin Rheumatol. 2009 Mar;28(3):357-9. Epub 2008 Dec 20.
Successful treatment for sympathetic storms in a patient with neuro-Behçet's

Gono T, Murata M, Kawaguchi Y, Wakasugi D, Soejima M, Yamanaka H, Hara M.
Institute of Rheumatology, Tokyo Women's Medical University, 10-22 Kawada-cho,
Shinjuku-Ku, Tokyo 162-0054, Japan.

9) Rheumatol Int. 2009 Mar;29(5):601-3. Epub 2008 Sep 26.
Behçet's disease: clinical value of the video capsule endoscopy for small
intestine examination.

Neves FS, Fylyk SN, Lage LV, Ishioka S, Goldenstein-Schainberg C, Sakai P,
Gonçalves CR.
Rheumatology Unit, University of São Paulo, Av. Dr. Arnaldo 455, 3 andar, sala
3133, Pacaembu, São Paulo, SP, CEP 01246-903, Brazil,

10) Hellenic J Cardiol. 2008 Nov-Dec;49(6):408-14.
Reduced pressure wave reflections in patients with active clinical status of
Adamantiades-Behcet disease.

Protogerou AD, Achimastos A, Vlachopoulos C, Stamatelopoulos KS, Papaioannou TG,
Papamichael CM, Aznaouridis K, Kaklamanis P, Mavrikakis M, Stefanadis C, Lekakis
Department of Clinical Therapeutics, Alexandra Hospital, Medical School National
& Kapodistrian University of Athens, Athens, Greece.
Full article is available for free at:

Monday, March 9, 2009

Stress in childhood may lead to inflammatory diseases later in life

Is there a chance that you might have had a stressful childhood before developing Behcet's? It happened to me, and who knows...maybe it happened to you, too.

Here are some abstracts and articles that can give you some more information. Two of the articles are available online for free.

1: Dube SR, Fairweather D, Pearson WS, Felitti VJ, Anda RF, Croft JB.
Cumulative childhood stress and autoimmune diseases in adults.
Psychosom Med. 2009 Feb;71(2):243-50. Epub 2009 Feb 2.
Excerpt: "Childhood traumatic stress increased the likelihood ofhospitalization with a diagnosed autoimmune disease decades into adulthood. Thesefindings are consistent with recent biological studies on the impact of earlylife stress on subsequent inflammatory responses."
PMID: 19188532

2: Jessop DS.
The fragile mind: early life stress and inflammatory disease.
Endocrinology. 2008 Jun;149(6):2724-6. No abstract available (sorry -- maybe your doctor can get a copy of this article. It may also be available at a local medical library)
PMID: 18493026

3: Danese A, Pariante CM, Caspi A, Taylor A, Poulton R.
Childhood maltreatment predicts adult inflammation in a life-course study.
Proc Natl Acad Sci U S A. 2007 Jan 23;104(4):1319-24. Epub 2007 Jan 17.
Full article available online for free, at:
PMID: 17229839

4: Pace TW, Mletzko TC, Alagbe O, Musselman DL, Nemeroff CB, Miller AH, Heim CM.
Increased stress-induced inflammatory responses in male patients with major
depression and increased early life stress.
Am J Psychiatry. 2006 Sep;163(9):1630-3.
Full article available online for free, at:
PMID: 16946190

Monday, February 9, 2009

Helping others by participating in research studies

If you have a chronic illness like Behcet's, and especially if you're in pain, it's easy to get depressed. There might even be days when you think, "How can I help anyone else when there are days that I can't even help myself?"

Well, here are three different research studies that you might be able to participate in. You don't even have to leave your home, and each one provides some financial compensation for your time. Better yet, your participation may help with the creation of future programs that will assist other chronically-ill people and/or students.

These studies are being run by the behavioral research company where I have a full-time job as a medical writer. The company is called Inflexxion (pronounced "inflection") and you can see more information about it at

**I don't receive any compensation from Inflexxion by referring people for these studies**

You'll need to email and/or speak with the Research Coordinators listed below in advance of enrolling in any of the studies, to make sure that you're eligible.

Feel free to share this information with anyone else who might want to participate.

(1) Participate in an NIH Migraine Research study

This study, funded by the National Institutes of Health (NIH), will test a Web-based program designed to help people cope with migraine. Migraine headache is a common, chronic medical condition involving recurrent acute attacks that create pain, disability, and distress. The study will compare the Web program with other strategies used to help treat migraine headache.

This is a 6-month study.
You will need to complete a 2-week daily headache record online.
You will need to fill out surveys at 4 different points in time over 6 months.
You will receive $25 for each completed survey (a total of $100 for all 4 surveys).

There will be two study groups:
One group completes the surveys only
The other group completes the surveys and participates in website sessions.
You will be randomly assigned to a study group.

Why participate?
You may reduce the frequency and severity of your headaches.
You may learn more about migraine headaches.
You may earn up to $100.

Dan Surette, Research Coordinator
dsurette at inflexxion dot com
1-800-848-3895, ext. 273

(2) Participate in an NIH-funded study for Back Pain

This study, funded by the National Institutes of Health (NIH), will test a Web-based program designed to help people cope better with back pain. Low back pain is one of the most prevalent medical complaints, affecting as many as four out of five Americans at some point in their lives.

This is a 6-month study.
You will need to fill out surveys at 4 different points in time over 6 months.
You will receive $50 for each completed survey (a total of $200 for all 4 surveys)

There will be two study groups:
One group completes the surveys and received back pain information via email.
The other group completes surveys and reads website sessions online.
You will be randomly assigned to a study group.

Why participate?
You may learn more about self-management of back pain.
You may earn up to $200.

Elizabeth Yiu, Research Coordinator
eyiu at inflexxion dot com
1-800-848-3895, ext. 255


Created with support from the National Institutes of Health (NIH), MyStudentBody's comprehensive program addresses the most relevant health-related issues on college campuses today, covering drug and alcohol abuse, sexual health, nutrition, tobacco, and stress.

We are recruiting students to participate in a MyStudentBody usability study. We are looking for high school seniors intending to go to college, and college freshmen and sophomores currently enrolled as full-time students. All students must be 18+. Participants will be able to do this study on their own computers, without having to come to us. We hope to recruit a sample of students that is diverse in gender, race, and geographic location.

Participants will receive $50 for their time (approx. 1 hour on the phone/computer)

Stacey Mehringer, Research Coordinator
smehringer at inflexxion dot com
1-800-848-3895, ext. 227

If I hear of any other studies, I'll post them here. (I was hoping to include information on one additional study -- a "Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases," which appeared in the most recent ABDA newsletter, but the link no longer works. It's possible that the study has ended.)

Tuesday, February 3, 2009

Behcet's disease and economic reality

The economy is tough for everyone these days, and the type of work that I do (medical writing) is facing hard times. I have a good full-time job at a behavioral research company, translating medical research into information that "real people" (not doctors) can understand and use. But like most other companies, the place where I work is searching for ways to keep going when there are fewer opportunities -- and less money -- coming in. So far my job is safe, but there will probably be layoffs on the horizon.

My Behcet's book sales aren't faring any better. And my husband's business closed in 2008 after 18 years.

So now I'm selling what I can from around the house, and doing freelance medical writing in my "spare time," at night and on the weekends, to try to pay the bills. What have I found out by getting this extra job?
  1. That the competition is so fierce for freelance writing jobs right now that there were 20 candidates in the room at once at my last interview, with another 20 people joining in on a conference call. I refer to it as my "cattle call" interview. This was in the Boston area a couple of months ago. I can only imagine that it's worse now.

  2. I've applied for many other freelance jobs since then. There are so many candidates that companies don't even bother to tell you anymore if the jobs you've applied for (and in some cases, interviewed for) have been filled.

  3. Behcet's doesn't care about your work situation, and whether or not you need to have a job. As of this September, I'll have had Behcet's for 30 years. Thankfully my symptoms have lessened from the hard times I had in the first 10-15 years, because I don't think I'd have a chance of maintaining this schedule if my health returned to the way it used to be. I can live with the undercurrent of basic BD-related crap. It's not fun, but it could (and has been) worse.

  4. In the end, you do what you have to do to keep going. I thank God that I have a job(s) right now, and keep my fingers crossed that I won't have to join the huge numbers of unemployed people in the U.S.
I still have a lot of plans for Behcet's-related booklets/books, but it's stopped being a priority for me right now. That makes me sad, but I'm hoping to be able to get back to it when things improve -- and when I can (hopefully) stop doing this extra freelance work.

At least I'll still be able to offer info through this blog, and through the different BD support groups that I belong to.

Here's looking ahead to better times for all of us.