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