Saturday, December 11, 2010

Twenty medical journal abstracts about pediatric Behcet's

1: Krupa B, Cimaz R, Ozen S, Fischbach M, Cochat P, Koné-Paut I.
Pediatric Behcet's Disease and Thromboses.
J Rheumatol. 2010 Nov 15. [Epub ahead of print]
PubMed PMID: 21078724.

2: Koné-Paut I, Darce-Bello M, Shahram F, Gattorno M, Cimaz R,
Ozen S, Cantarini L, Tugal-Tutktun I, Assaad-Khalil S, Hofer M,
Kuemmerle-Deschner J, Benamour S, Al Mayouf S, Pajot C,
Anton J, Faye A, Bono W, Nielsen S, Letierce A, Tran TA; the
PED-BD International Expert Committee.
Registries in rheumatological and musculoskeletal conditions. Paediatric Behcet's disease: an international cohort study of 110 patients. One-year follow-up data.
Rheumatology (Oxford). 2010 Oct 29. [Epub ahead of print]
PubMed PMID: 21036877.

3: Robinson AB, Gallentine WB, Rabinovich CE.
Pediatric neuro-Behcet's disease responsive to adalimumab.
Pediatr Neurol. 2010 Oct;43(4):291-3.
PubMed PMID: 20837311.

4: Ozen S. Pediatric onset Behçet disease.
Curr Opin Rheumatol. 2010 Sep;22(5):585-9. Review.
PubMed PMID: 20616738.

5: Ozen S, Bilginer Y, Besbas N, Ayaz NA, Bakkaloglu A.
Behçet disease: treatment of vascular involvement in children.
Eur J Pediatr. 2010 Apr;169(4):427-30. Epub 2009 Sep 13.
PubMed PMID: 19756733.

6: Kaneko U, Kishi T, Kikuchi M, Hara R, Shinoki T, Miyamae T,
Imagawa T, Mori M, Yokota S.
[Two patients with childhood-onset Behcet's disease successfully treated by anti-tumor necrosis factor therapy].
Nihon Rinsho Meneki Gakkai Kaishi. 2010;33(3):157-61. Japanese.
PubMed PMID: 20601837

7: Kesen MR, Goldstein DA, Tessler HH.
Uveitis associated with pediatric behçet disease in the american midwest.
Am J Ophthalmol. 2008 Dec;146(6):819-27.e2. Epub 2008 Jul 30.
PubMed PMID: 18672222

8: Duzova A, Bakkaloglu A.
Central nervous system involvement in pediatric rheumatic diseases: current concepts in treatment.
Curr Pharm Des. 2008;14(13):1295-301. Review.
PubMed PMID: 18537653.

9: de Carvalho VO, Abagge KT, Giraldi S, Kamoi TO, Assahide MK,
Fillus Neto J, Marinoni LP.
Behçet disease in a child--emphasis on cutaneous manifestations.
Pediatr Dermatol. 2007 Sep-Oct;24(5):E57-62.
PubMed PMID: 17958782

10: Koné-Paut I, Sanchez E, Le Quellec A, Manna R, Touitou I.
Autoinflammatory gene mutations in Behcet's disease.
Ann Rheum Dis. 2007 Jun;66(6):832-4. Epub 2007 Jan 9.
PubMed PMID: 17213252; PubMed Central PMCID: PMC1954666

11: Borlu M, Ukşal U, Ferahbaş A, Evereklioglu C.
Clinical features of Behcet's disease in children.
Int J Dermatol. 2006 Jun;45(6):713-6.
PubMed PMID: 16796634

12: Hatachi S, Nakazawa T, Morinobu A, Kasagi S, Kogata Y, Kageyama G, Kawano S,
Koshiba M, Kumagai S. A pediatric patient with neuro-Behcet's disease. Mod
Rheumatol. 2006;16(5):321-3. PubMed PMID: 17039316

13: Levy-Clarke GA, Nussenblatt RB, Smith JA.
Management of chronic pediatric uveitis.
Curr Opin Ophthalmol. 2005 Oct;16(5):281-8. Review.
PubMed PMID: 16175040

14: Miura MS, Lubianca Neto JF, Krumenauer RC, Prates K,
de Castro R, Saffer M.
Behçet's disease: external ear involvement.
Int J Pediatr Otorhinolaryngol. 2004 Jun;68(6):817-21.
PubMed PMID: 15126024

15: Saltik S, Saip S, Kocer N, Siva A, Yalçinkaya C.
MRI findings in pediatric neuro-Behçet's disease.
Neuropediatrics. 2004 Jun;35(3):190-3.
PubMed PMID: 15248102

16: Koné-Paut I, Gorchakoff-Molinas A, Weschler B, Touitou I.
Paediatric Behcet's disease in France.
Ann Rheum Dis. 2002 Jul;61(7):655-6.
PubMed PMID: 12079915; PubMed Central PMCID: PMC1754171

17: Koné-Paut I, Geisler I, Wechsler B, Ozen S, Ozdogan H,
Rozenbaum M, Touitou I.
Familial aggregation in Behcet's disease: high frequency in siblings and parents
of pediatric probands.

J Pediatr. 1999 Jul;135(1):89-93.
PubMed PMID: 10393610

18: Koné-Paut I, Yurdakul S, Bahabri SA, Shafae N, Ozen S,
Ozdogan H, Bernard JL.
Clinical features of Behcet's disease in children: an international collaborative
study of 86 cases.

J Pediatr. 1998 Apr;132(4):721-5.
PubMed PMID: 9580778

19: Koné-Paut I, Chabrol B, Riss JM, Mancini J, Raybaud C,
Garnier JM.
Neurologic onset of Behcet's disease: a diagnostic enigma in childhood.
J Child Neurol. 1997 Jun;12(4):237-41.
PubMed PMID: 9203064

20: Bessmertny O, Pham T.
Thalidomide use in pediatric patients.
Ann Pharmacother. 2002 Mar;36(3):521-5. Review.
PubMed PMID: 11895068

Monday, September 13, 2010

Getting flu vaccinations when you have Behcet's

The question comes up every year: "I have Behcet's -- should I risk getting a flu shot?"

And just like clockwork, an article shows up in some medical journal or other to help you (and your doctors) make a decision. Granted, these articles never seem to specifically cover Behcet's, but the info is still useful.

The latest article (just published in September's issue of "Rheumatology") is called "Vaccinations in patients with immune-mediated inflammatory diseases." You can read the whole article for free online, and share it with other people, by going here:

The bottom line: Vaccinations against flu and pneumonia in people with inflammatory diseases may be helpful as long as they're not LIVE vaccines. Also, patients who are taking immunosuppressant meds may not have as strong an immune response to vaccines...that means they have a higher chance of getting the illness than someone who's been vaccinated and ISN'T taking immunosuppressant drugs. Regardless, if you have any questions about the safety of getting a flu shot when you have Behcet's, speak with your doctor(s) FIRST!!

Here are two other articles that you might find interesting:

An audit of influenza and pneumococcal vaccination in rheumatology outpatients
Sowden E, Mitchell WS.
BMC Musculoskelet Disord. 2007 Jul 4;8:58.

Vaccination in patients with chronic rheumatic or autoimmune diseases.
Gluck T, Müller-Ladner U.
Clin Infect Dis. 2008 May 1;46(9):1459-65. Review.
PMID: 18419456.

And how about vaccinations other than flu shots? Here are some extra articles and abstracts that you might want to read:

1: Bir LS, Esmeli FO, Cenikli U, Erdogan C, Degirmenci E.
Acute transverse myelitis at the conus medullaris level after rabies vaccination in a patient with Behcet's disease.
J Spinal Cord Med. 2007;30(3):294-6.
PubMed PMID: 17684898;

2: Erkek E, Ayaslioglu E, Erkek AB, Kurtipek GS, Bagci Y.
Response to vaccination against hepatitis B in patients with Behcet's disease.
J Gastroenterol Hepatol. 2005 Oct;20(10):1508-11.
PubMed PMID: 16174066.

3: Molloy ES, Powell FC, Doran MF, Ryan JG, Mulligan NJ, McCarthy CJ, Keogan MT,
McCarthy GM.
An unusual case of Behcet's syndrome: triggered by typhoid vaccination?
Clin Exp Rheumatol. 2004 Jul-Aug;22(4 Suppl 34):S71-4.
PubMed PMID: 15515791.

Saturday, September 4, 2010

Please register at the VCRC's new Behcet's Disease database

I just received the following info from Cindy Foster, who runs There's a new research database that's open for registration by all US and Canadian BD patients, as well as BDers in any other countries. It's run by the Vasculitis Clinical Research Consortium, as part of the Rare Diseases Clinical Research Network. It received funding from the NIH. The registration process only takes about 2 minutes, and doesn't require any info from your medical records or doctors. Please read the information from Cindy (below) and then sign up! (Even though it says that only certain NON-BD patients are eligible to register right now, if you click on "Behcet's Disease," you'll be taken to the registration form.)

Thanks so much, Cindy, for your work on getting Behcet's included in the database!

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.


Here is more information, from the VCRC:

There are several ways that you can take action with the VCRC. You may join our contact registry, participate in clinical trials, or participate with associated patient advocacy groups. More information about each is featured in this section.

What is the Contact Registry?

The VCRC Contact Registry is a method by which patients with vasculitis can register themselves with the VCRC in order to be contacted in the future about clinical research opportunities and updates on the progress of the VCRC research projects. The contact registry is anonymous and free of charge.

You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients. This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health.

The reason we would like to create the contact registry is to inform patients and/or parents of patients in the contact registry of clinical research studies performed in our new multi-center Vasculitis Clinical Research Consortium. The Vasculitis Clinical Research Consortium has been established to collect information and perform research on vasculitic disorders including Behcet's Disease, Takayasu’s Arteritis, Giant Cell Arteritis, Polyarteritis Nodosa, Wegener’s Granulomatosis, Microscopic Polyangiitis, and the Churg Strauss Syndrome. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.

Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.

Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.

Who Can Join the Contact Registry?

We encourage patients from all 50 states in the United States and every country to join the VCRC Contact Registry. Any patient with a confirmed or suspected diagnosis of a vasculitis disorder (such as Behcet's Disease, Giant Cell Arteritis, Takayasu’s Arteritis, Wegener’s Granulomatosis, Microscopic Polyangiitis, Churg Strauss Syndrome, or Polyarterteritis Nodosa) can register.

How does the Contact Registry Work?

After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.

Click here to join the Contact Registry!

Tuesday, June 29, 2010

A little grapefruit juice to wash down that medicine? You might want to think twice.

I love eating grapefruit and drinking grapefruit juice. That's why it's so annoying when I'm taking a new medication and I find out that grapefruit is temporarily off the menu. That's because grapefruit doesn't always "play well" with some medicines. Of course, doctors and pharmacists don't always remember to tell you about grapefruit/drug interactions in advance... and who actually reads ALL of the small type on the drug inserts or handouts anyway?

So what can happen if you mix grapefruit juice or slices with some medications? Well, that depends on the drug. In some cases, it can make your doses stronger than they should be; in other cases, it could make your medicine worthless by canceling out the drug's action in your body.

That's why I was thrilled to find an online resource that lists grapefruit-drug interactions. Your best option, of course, is always to ask your doctor or pharmacist if grapefruit interacts with your medicine. Find out if you'll need to avoid grapefruit juice and slices within a certain time frame of taking your medicine, or if you'll have to stay away from them altogether. If you forget to ask your doctor or pharmacist, though, another good option is to keep this list handy.

The following information is posted with the permission of Dr. Dean Elbe of Food-Medication Interactions. This information is from 2007; an updated listing will be available soon.

1 - Manufacturer recommends avoidance.
2 - Use with grapefruit/related citrus only on advice of a physician.
3 - Serum/Plasma level monitoring required/recommended.
4 - Minor interaction, not clinically significant.
5 - Interaction suspected, but no formal studies.
6 - No formal studies, but lacks a cardiotoxic metabolite.
7 - Not metabolized by 3A4, no interaction suspected.
8 - No interaction when drug administered parenterally [by injection, IV, or means other than eating/ingesting]
9 - Withdrawn from market.
10 - Blood levels/bioavailability decreased.
11 – Risk higher in CYP 2D6 poor metabolizers.

Medications that should be avoided with grapefruit:
amiodarone (Cordarone) 8
astemizole (Hismanal) 5, 9
atorvastatin (Lipitor)
budesonide (Entocort) 8
buspirone (BuSpar)
cerivastatin (Baycol) 5, 9
cilostazol (Pletal) 5
cisapride (Propulsid, Prepulsid) 9
colchicine 5
eletriptan (Relpax) 5
etoposide (Vepesid) 8, 10
halofantrine (Halfan)
lovastatin (Mevacor)
mifepristone (Mifeprex) 5
pimozide (Orap) 5
quinidine (Quinaglute, Quinidex) 8, 10
sildenafil (Viagra)
simvastatin (Zocor) 8
sirolimus (Rapamune) 1, 5
terfenadine (Seldane) 9
ziprasidone (Geodon) 5

Use with grapefruit with caution:
albendazole (Albenza)
alfentanil (Alfenta) 8
alfuzosin (Uroxatral) 5
almotriptan (Axert) 5
aprepitant (Emend) 5
aripiprazole (Abilify) 5
bupropion (Wellbutrin, Zyban) 5
carbamazepine (Tegretol) 3
cinacalcet (Sensipar) 5
clomipramine (Anafranil)
cyclosporine (Neoral) 2, 3, 8
darifenacin (Enablex) 5
delavirdine (Rescriptor) 5
diazepam (Valium) 8
dofetilide (Tikosyn) 5
efavirenz (Sustiva) 5
erlotinib (Tarceva) 5
erythromycin (Eryc, E-mycin, Erythromid, Erybid) 8
eszopiclone (Lunesta) 5
felodipine (Renedil, Plendil)
fexofenadine (Allegra) 10
fluvoxamine (Luvox)
gefitinib (Iressa) 5
imatinib mesylate (Gleevec/Glivec) 5
indinavir (Crixivan) 10
itraconazole (Sporanox) 10
losartan (Cozaar)
methadone (Dolophine) 5
methylprednisolone (Medrol) 8
midazolam (Versed) 8
montelukast (Singulair) 5
nicardipine (Cardene) 8
nifedipine (Procardia)
nimodipine (Nimotop)
nisoldipine (Sular)
oxybutynin (Ditropan) 5
propafenone (Rythmol) 5, 11
quetiapine fumarate (Seroquel) 5
ramelteon (Rozerem) 5
saquinavir (Invirase) 2
sertraline (Zoloft)
solifenacin (Vesicare) 5
tacrolimus (Prograf) 2, 3, 8
tamoxifen (Nolvadex) 5
tamsulosin (Flomax) 5
tolterodine (Detrol) 5
triazolam (Halcion)
trazodone (Desyrel) 5

Medications with no significant interaction with grapefruit
Drugs in this section have all been studied with grapefruit,
and found to have either a minimal/negligible interaction:

acebutolol (Monitan, Sectral) 4
alprazolam (Xanax) 4
amlodipine (Norvasc) 4
amprenavir (Agenerase) 4, 10
caffeine 4, 8
carvedilol (Coreg) 4
clarithromycin (Biaxin)
clozapine (Clozaril) 4
digoxin (Lanoxin) 8
diltiazem (Cardizem) 4, 8
eplerenone (Inspra) 4
ethinyl estradiol 4, 8
fentanyl (Actiq) 4, 8
haloperidol (Haldol) 8
lansoprazole (Prevacid) 4, 8
levothyroxine (Eltroxin, Synthroid) 4, 8
omeprazole (Losec, Prilosec) 4
phenytoin (Dilantin) 8
pravastatin (Pravachol)
prednisone (Deltasone)
scopolamine (Hyoscine) 4, 8
17-β estradiol 4, 8
telithromycin (Ketek) 4
theophylline (Theo-Dur, Uniphyl)
verapamil (Calan, Isoptin, Verelan) 8
warfarin (Coumadin) 8

Medications considered safe for use with grapefruit:
cetirizine (Zyrtec, Reactine) 6
desloratadine (Aerius, Clarinex) 7
fluvastatin (Lescol) 7
loratadine (Claritin) 6
praziquantel (Biltricide)
rosuvastatin (Crestor) 7

Sunday, June 13, 2010

Some helpful books for Behcet's patients

**If you subscribe to this blog by email and don't see any pictures of book covers below, then please read this post at the blog site instead:  **

There are several books available through that may be helpful for you as a Behcet's patient. (Not counting my own books, of course  ;-)  which are available at my Behcet's online bookstore.)

For full disclosure, yes I'd get a small referral fee for any book that's ordered through this blog post -- but that's not the reason I'm doing it. The bottom line is it's just too expensive for me to keep copies of all of these books stocked in my own inventory. So these book recommendations will let you know what's out there, and what I feel will help the most patients. If you'd rather not spend the money, your local library or med school/hospital library may even have some of them available instead.

Be well,

Coping with Prednisone: Revised and Updated (2007) 
It may work miracles, but how do you handle the side effects?

How to Get SSI and Social Security Disability:
An Insider's Step by Step Guide

Disability Workbook for Social Security Applicants:
 7th Edition (2008)

NEW:  Behcet's Syndrome
By Yusuf and Hasan Yazici, top Behcet's researchers & clinicians
400 pages

by Oliver Sacks

The best book about migraine headaches that I've ever read.

Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop
From the American Academy of Neurology (2006)

The Complete Idiot's Guide to the Anti-Inflammation Diet (2006)
No, I don't know if this diet works, but it's been kicking around for a bit and some people swear by it.

The Promise of Low Dose Naltrexone Therapy:
Potential Benefits in Cancer, Autoimmune, Neurological and Infectious Disorders (2008)
This is an expensive book, and I'm not suggesting that BDers should jump on the LDN bandwagon. But if you're interested in the subject and want some background, this book might help you. Your local/regional library may have a copy if you don't want to buy it yourself.

A Guide to Ocular Inflammatory Disease [including uveitis]
By C. Stephen Foster, M.D., F.A.C.S.
This booklet can be read online at:
It's also possible to order a free hard-copy version here:

For anyone wanting one of the USB medical record "dog tag" necklaces that I had for sale at the ABDA conference in April, you can get more information by clicking on the "American Medical ID" logo at the top right of this blog post, then type "USB eMedTAG" in the search box.

And finally, here are some Behcet's books/products that you SHOULDN'T buy:

21st Century Ultimate Medical Guide to Behcet's Syndrome - Authoritative Clinical Information for Physicians and Patients (Two CD-ROM Set)
by PM Medical Health News (CD-ROM - Mar. 14, 2009)   $25. See my review at the link for an idea of why I don't recommend buying this CD set.

2009 Empowered Patient's Complete Reference to Behcet's Syndrome - Diagnosis, Treatment Options, Prognosis (Two CD-ROM Set) by PM Medical Health News (CD-ROM - Mar. 14, 2009) $25. Again, see my online review at the link.

Behçet Disease Medical Guide by Qontro Medical Guides (Paperback - July 9, 2008).  $9.99. The price is great, but only 9 of the total 28 pages have any information on Behcet's -- and what's there is printed in large type. There are 4 pages of references, and 10 pages explaining how the GNU Free Documentation License works (allowing you to share the contents of the booklet with anyone you'd like).

Behçet's disease by Frederic P. Miller, Agnes F. Vandome, and John McBrewster (Alphascript Publishing, Paperback - Mar. 5, 2010). Alphascript is a publishing mill, cranking out computer-generated content... with a twist. This time, all of the content is taken directly from Wikipedia, of all places -- not known as a great source of accurate info. The book is already listed as "out of print," even though it just came out in March, so maybe amazon has gotten wise to these scams. If you want to see a definition of "irony," take a look at Wikipedia's entry on Alphascript Publishing  ;-)

The Official Patient's Sourcebook on Behcet's Disease: A Revised and Updated Directory for the Internet Age  (Icon Health Publications)  $29.95. Another publishing mill, with over 1,900 medical topics in print. They used a template to create this book, substituting "Behcet's" in all the appropriate places.

Wednesday, May 19, 2010

Behcet's and your gums and teeth

I'm often asked whether people with Behcet's have an unusual amount of dental problems. Some people complain of having cavities along the gum line, while others have teeth that seem to fall apart or require a lot of crowns. And a small number of people give up entirely and have all of their teeth pulled, so that they can have dentures instead (which can lead to a whole host of other problems, like gum ulcers/lesions -- especially if the dentures don't fit well).

Face it, it can be hard to pay attention to your teeth and gums if you have a lot of problems with oral ulcers: Ulcers on your gums, tongue, and anywhere else in your mouth can make it really painful to brush and/or floss. Going to the dentist or periodontist can be a big problem, too, if you're one of the people who gets a flare following any dental work or cleaning.

While I was at the latest American Behcet's Disease Association medical conference at the end of April, a dentist spoke about BD and oral issues. He has a particular interest in the subject because his wife has Behcet's, and has needed an unbelievable number of root canals. Informal surveys that he's performed (including one that he did during his ABDA presentation) has shown that approx. 30% of BD patients have this need for multiple root canal procedures. If any readers have had this issue (or other tooth/cavity-related issues), please feel free to leave a comment at the end of this post. I'll forward relevant comments to the dentist, who is hoping to start formal research on this topic.

In the meantime, here are some summaries of published articles on Behcet's and dental problems:

The close association between dental and periodontal treatments 
and oral ulcer course in Behcet's disease: a prospective clinical study.
J Oral Pathol Med. 2009 May;38(5):410-5. Epub 2009 Mar 5.
Karacayli U, Mumcu G, Simsek I, Pay S, Kose O, Erdem H, Direskeneli H, 
Gunaydin Y, Dinc A.
Department of Oral and Maxillofacial Surgery, Gulhane School of Medicine, 
Ankara, Turkey. 
The aim of the study was to see the effect of dental and periodontal treatments 
on the course of oral ulcers in patients with Behcet's disease (BD). Fifty-eight 
BD patients with oral ulcers were studied. Twenty-nine patients were given 
dental and periodontal cleanings and treatment, while 29 in a control group 
were only given oral hygiene education. 
Results: There was an increase in the number of new oral ulcers within 
2 days of the treatment [period]. However, 6 months after the dental and 
periodontal treatments, the number of oral ulcers was significantly lower 
in the treated group compared with  the control group. 
Conclusion: The results suggest that, in BD patients, dental and 
periodontal therapies could be associated with a flare-up of oral ulcers 
in the short term, but may decrease their number in longer follow-up. 
They also lead to better oral health. 
PMID: 19320802 
Relationship between periodontal parameters and Behcet's 
disease and evaluation of different treatments for oral recurrent 
aphthous stomatitis.
J Periodontal Res. 2009 Dec;44(6):718-25. Epub 2008 Dec 11.
Arabaci T, Kara C, Ciçek Y. 
Department of Periodontology, Faculty of Dentistry, Atatürk University, Erzurum, 

"Since oral aphthous ulcers impair tooth brushing, reducing complaints about 
aphthous ulcers will motivate the patient to maintain better oral hygiene 
performance and will thus reduce plaque accumulation and periodontal scores. 
The purpose of this controlled case study was to evaluate the relationship 
between the severity of periodontal scores and Behcet's disease, and to 
compare the treatment modalities with neodymium-doped yttrium aluminium 
garnet (Nd:YAG) laser and medication on the recurrent aphthous ulcers in 
BD patients by considering the degree of pre- and post-treatment pain, 
discomfort and functional complications. 
Results: BD patients treated with the Nd:YAG laser had less post-treatment 
pain and fewer complications and reported immediate relief of pain and 
faster healing. 
Conclusion: Our results suggest that periodontal status is worse in 
BD patients and is associated with disease severity; also, the Nd:YAG 
laser has better patient acceptance, shorter treatment time and lower 
rates of pain and post-treatment adverse events among BD patients 
with oral recurrent aphthous stomatitis."
PMID: 19076988 [PubMed - indexed for MEDLINE]

Relationship between periodontal findings and the TNF-alpha Gene 
1031T/C polymorphism in Turkish patients with Behcet's disease
J Eur Acad Dermatol Venereol. 2008 Aug;22(8):950-7. Epub 2008 Mar 19. 
Akman A, Sallakci N, Kacaroglu H, Tosun O, Yavuzer U, Alpsoy E, Yegin O.
Department of Dermatology and Venerology, Akdeniz University School of 
Medicine,  Antalya, Turkey.

Background: "Genetic factors predispose individuals to Behcet's 
disease (BD)  and periodontal disease. Tumour necrosis factor-alpha 
(TNF-alpha) has been implicated in the pathogenesis [development] of 
both BD and periodontal disease. The relationship with periodontitis 
and the pathogenesis of BD has not yet been determined. 
Methods: Eighty-two unrelated patients with BD, 42 RAS [recurrent 
aphthous stomatitis] patients and 77 HC [healthy controls] were enrolled 
in the study. Periodontal status of all subjects was evaluated according 
to the World Health Organization community periodontal index of treatment 
needs (CPITN). 
Conclusions: Our data indicate that the TNF-alpha-1031T/C gene 
polymorphism (CC genotype) is a risk factor for periodontitis, RAS and 
BD patients and also suggests that long-term periodontal follow-up and 
education of oral hygiene in patients with BD may help to prevent the 
development and/or progression of the disease."
PMID: 18355201 

Relationship between periodontal findings and Behcet's disease: 
a controlled study.
J Clin Periodontol. 2007 Jun;34(6):485-91. Epub 2007 Apr 23. 
Akman A, Kacaroglu H, Donmez L, Bacanli A, Alpsoy E. 
Department of Dermatology and Venerology, Akdeniz University School 
of Medicine, Antalya, Turkey. 

BACKGROUND: "Behcet's disease (BD) is a chronic, relapsing, systemic vasculitis of
unknown aetiology. The involvement of oral mucosal surfaces represents the onset 
feature of the disease in the majority of patients. 
OBJECTIVE: The aim of this study was to evaluate the periodontal status of BD patients 
and then compare with recurrent aphthous stomatitis (RAS) patients and healthy controls. 
We also determined the relationship between the periodontal condition and the clinical
severity of the disease in BD patients. 
METHODS: Eighty-six patients with BD, 63 patients with RAS and 82 healthy subjects 
were included in the study. The periodontal status of all subjects was evaluated
according to the community periodontal index of treatment needs (CPITN). BD 
patients were also assessed for  clinical severity score (CSS) as described previously. 
were observed to be higher in BD patients (1.79 +/- 0.96) compared with RAS
patients (1.22 +/- 0.87) and healthy controls (1.18 +/- 0.98) (p<0.001). There
was a positive association between CSS and CPITN (p=0.017) in BD patients.
CONCLUSION: Our results showed that periodondal status is worse in BD patients
and associated with disease severity. We can speculate that periodontitis may
induce a systemic inflammatory process that may contribute to the development
and/or progression of BD. "
PMID: 17451414 

Periodontal findings and systemic antibody responses to oral microorganisms in
Behcet's disease.
J Periodontol. 1999 Dec;70(12):1449-56. 
Celenligil-Nazliel H, Kansu E, Ebersole JL. 
Department of Periodontology, Faculty of Dentistry, Hacettepe University, Ankara,

BACKGROUND: "Behcet's disease is a multisystem disorder of unknown etiology,
affecting predominantly the oral mucosa, skin, and eyes. Recurrent and painful
episodes of oral ulcerations interfere with regular oral hygiene leading to rapid
bacterial plaque accumulation. The aims of this study were to evaluate the
periodontal status of patients with Behcet's disease and determine serum antibody
responses to selected oral microorganisms, including major periodontopathogens in
these patients. 
METHODS: Thirty-three patients with Behcet's disease and 15
healthy subjects were included in the study. Plaque, sulcular bleeding,
periodontal index scores, probing depths, and total number of teeth were
recorded. Serum IgG antibody levels to a panel of 13 oral microorganisms were
RESULTS: Significantly higher values for each of the clinical
measures were observed in patients with Behcet's disease compared to healthy
subjects (P <0.0001). Antibody levels to selected members of plaque, including
Actinomyces viscosus, Streptococcus mutans, Streptococcus sanguis, Streptococcus 
oralis, Eikenella corrodens, Campylobacter rectus, and Prevotella intermedia were
significantly lower in patients with Behcet's disease than in controls (P
<0.001-0.05). In contrast, these patients exhibited significantly elevated
antibody levels to Actinobacillus actinomycetemcomitans Y4 compared to controls
(P <0.01). 
CONCLUSIONS: Our data indicate that the patients with Behcet's disease
generally exhibit clinical findings of established periodontal disease. Decreased
antibody responses to early colonizers of both supra- and subgingival plaque were
observed along with the elevation in antibody levels to A. actinomycetemcomitans.
These results suggest that the bacterial plaque ecology and/or immune responses
to these microorganisms may be affected in Behcet's disease which could lead to
changes in the expression of periodontal disease. "
PMID: 10632520 

Monday, January 18, 2010

Join me at the American Behcet's Disease Association conference in April!

Whether you have Behcet's or someone close to you has it.... or you're treating someone who has BD, then the American Behcet's Disease Association medical conference is worth your time.

The next ABDA conference is in Orlando, FL from Friday, April 23rd through Sunday, April 25th. I've been to every conference since the mid-1990s, and I still learn new things at each one. Here are just a few examples:
  • How to treat BD-related fatigue with psychostimulants (like Provigil), and ways to get your doctor onboard with the treatment
  • Different ways to treat oral/genital ulcers and other symptoms
  • New research that's being done on BD, and available clinical trials
  • Upcoming treatments that may be approved by the FDA
  • Patient-friendly explanations of neuro-Behcet's
  • New information on filing for disability (SSI and SSDI)
  • CAM (complementary/alternative) treatments for Behcet's
  • What treatments might be scams, and what works
  • What happens at BD-related appts at the Mayo Clinic, and at the Behcet's Syndrome Center in NYC
I could go on and on, but I think you get the idea.

What happens during the conference:
  • You have ACCESS TO THE DOCTORS WHO GIVE PRESENTATIONS. You can ask questions during/after each presentation, and many doctors are willing to talk to you separately if you have specific questions about your situation. (At one conference, a neuro-ophthalmologist helped me understand why a lesion in my brain was causing certain visual symptoms).

  • Patients often volunteer info during the presentations about specific symptoms that they're experiencing, and treatments that have helped them ... and they usually get FEEDBACK FROM THE PRESENTERS on why (or why not) these treatments are good.

  • Some PRESENTERS ASK PATIENTS about certain symptoms that patients experience, to get a little background for research that they're planning to do.

  • There are SUPPORT GROUPS for both patients AND their loved ones. (Each group is separate, since they have different care issues.)

  • Some companies provide FREE SAMPLES of their products.
But most of all.....
  • You finally have a chance to MEET OTHER BD PATIENTS FACE TO FACE to talk about symptoms, treatments, family issues, and how to handle life in general when you have a serious chronic illness.
This is your chance to get a HUGE amount of Behcet's-related information in a short period of time. And if you're a physician or other health care professional, it's also an opportunity to get CME credits. Since the conferences only happen every 3 years or so, your next chance may not be until 2013 or later.

Worried about the cost?

Yes, it's expensive to pay for airfare, lodging, and conference registration, especially during this recession. Some people have been able to get good package deals through online travel sites like Expedia (etc.), where the airfare and hotel are bundled together -- you wouldn't be staying at the conference hotel, but the room could be 50% less per night. Other people have been looking for roommates to cut the price down even more (joining one of the private online BD support groups, like the one here  may help you find a roomie). I've also cut costs in the past by going the fast-food route for meals instead of going out to restaurants. And if your room has a refrig (or even an ice bucket), you can keep some things cold in your room.

Some people ask why the actual ABDA registration fee for the conference is so high -- it ranges from $300 per patient up to $375, depending on whether or not you're an ABDA member and/or if you get the early-bird fee by registering before January 31st. A caregiver traveling with a patient also gets a lower rate of $150.

Please remember, the ABDA is a small organization, with limited funds:
  • The ABDA has to pay for all of the conference-session rooms at the hotel, breakfasts for attendees, the booking of additional rooms for support group meetings and ABDA products and book sales, projection set-up for the presentations, room set-u/clean-up by hotel staff, and food/etc for breaks during the conference.
  • While the people giving presentations aren't paid for their time, all of their airfare and lodging expenses need to be covered -- that's not just an ABDA issue, it's an industry standard so that conferences are able to get qualified presenters. 
  • Printing and supplies costs: Attendees get binders with extensive handouts for each presentation, along with additional printed information. And advertising costs for the conference included the printing/mailing of conference brochures to physicians and health care providers across the country.
  • Shipping isn't cheap -- the ABDA has to ship all of its registration materials, products, etc. to the conference location... and when the conference is over, everything needs to be shipped back out again.
The conference fee is as low as the ABDA can make it. If they lose money on a conference, then no one wins -- especially BDers who need this type of information to get the best possible treatment.

Your attendance at the conference could pay off if you learn even one money-saving tip about a treatment, or about filing for disability, or how to cut costs when seeing doctors in other locations.

Going to the ABDA conference is an investment in your health.
I hope to see you there.

Joanne Zeis
More information on this three-day event is available at
Early-bird registration ends on January 31st.