Saturday, November 1, 2008

Don't be scammed by "guaranteed" BD treatments

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

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

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

There's actually a point to all of this. You've probably seen online ads over the last few months for the following products:
  • Behctin
  • Behcotab
  • Cobirex
All of them are advertised as guaranteed, money-back-if-not-satisfied cures for Behcet's. It only takes 60 (or 90) days of these pills to supposedly solve your Behcet's problem for good.

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

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

Friday, October 31, 2008

Info on kidney involvement & neuro-BD

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

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

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

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

Tuesday, October 28, 2008

October 2008 research studies

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

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

Grand Rounds: “Behcet’s Disease: What It Is, and Isn’t”
[Available online in full, for free]

A presentation at NYU by Dr. Yusuf Yazici, Director of the Behcet's Syndrome Center, NYC.
October 16, 2008

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

Kenneth T. Calamia, Phaedon G. Kaklamanis
Mayo Clinic Jacksonville 4500 San Pablo Road Jacksonville FL 32224 USA
Current Rheumatology Reports, Vol. 10, No. 5, October 2008; 349-355.
This review examines important recent contributions to help the clinician more readily recognize patients with Behçet’s disease (BD) and institute appropriate care.

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

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

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

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

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