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Welcome to the 'Medical Questions' page.

Our resources consist of laypersons, research papers, medical journals and of course personal experience. We must stress that the replies should not be used as your sole source of information, nor can we guarantee an answer. Any answers or advice given is for information purposes only and any change in treatment or medications must be discussed with your primary physician/doctor first.

The information is provided from reliable sources that in our opinion are experienced in the treatment and effects of Behcet's Disease. This is probably one of the best sources of information for Behcet's Disease on the internet.

Your submission of any question implies that you have given us permission to discuss your medical case. For a full answer to be considered, your medical history details and medications list, may be required.

Please make sure you include an e-mail address if you use the form below. We CANNOT reply if you do not provide one. There are many medical research items in terms of published papers and abstracts.  We would suggest using your search engine for Medline, the online library of the National Institutes of Health or go to our very own links page and checkout some of the links there.

While you have to have special access to read full papers, all abstracts can be easily accessed by following the prompts and doing a search on either Behcet's Disease or Behcet's Syndrome.  If you find certain subjects (kidney involvement, GI, etc.) that are more interesting to you, you can also click a button to get only abstracts in those subject areas. 

As to things that cause flares.  Nobody knows for sure, and of course different people respond differently to different things, but it seems stress is a definite factor. Some even suggest that strong weather patterns cause a flare "ripple effect" among affected Behcet populations.  Some Behceters are also ANA + an indicator for lupus, and such persons are sensitive to sun and heat.  Any number of factors can cause flares - BUT - one thing is quite clear.  It is imperative that a Behceter gets regular good daily rest.

There are no specific and definitive tests for Behcet's; and it is good to know that even really sick Behceters rarely have significant blood and urine laboratory tests.  Some people do show increased levels in relevant tests that indicate an overall inflammatory effect, but these even are rare-ish. Example are positive antigen tests for HLA B27 and HLA B51  Having said all that; many physicians do take the overall presentation of a patient over time, obtain at some point a biopsy of a lesion showing vasculitis, and say to themselves:  oral ulcers, genital ulcers, vasculitis biopsy, possible eye problems  - equals Behcet's. 

Don't forget to carefully review the international diagnostic criteria and make certain your own case is properly charted (each symptom recorded in your medical record); this is a very important point to the correct diagnosis and treatment.  Some of you have also asked about the percentage of blindness in Behcet's.  Because so much is published on this subject, there is no hard and fast answer to your question.  The caveat we would like to point out is that blindness is not the only serious potential for untreated Behcet's; We place it at equal to the risks for stroke, paralysis, and a host of other things that emanate from the effects of vasculitis.  The thing to understand here is that we are talking about untreated Behcet's, first of all, and secondly, possibilities, not absolutes.  Sadly, a number of people do have eye involvement and have become blind, some reversibly and some irreversibly.  Careful monitoring by a qualified ophthalmologist who knows and understands Behcet's is crucial.

You also asked about "full recovery".  In our vocabulary, that would mean "cure", and there is no cure at this point in time.  There IS remission, however, and a great number of people have achieved lasting remission.  It depends on who you speak with, when, and what their own opinions are about how they achieved remission.  Conventional wisdom is that symptoms are managed with drugs like prednisolone, pentoxyfilline, drugs that treat involvement of specific systems (kidney, neuro, etc.); but the overall "cause and effect" aspects are treated with increasingly aggressive immunotherapy as needed. Currently there are a handful of immunotherapeutic agents in use.

You have asked about treatment for blindness, and what causes it. In Behcet's it can be treated if caught properly and early by a qualified ophthalmologist The conditions commonly seen are uveitis and iritis (there can be a  host of others as well); unless seriously aggressive (and this happens), both can be treated. 

Urinary issues.  There are two primary things to look at here:  These things can be caused by localised BD involvement (kidneys, bladder, uterus, etc.) as well as opportunistic infection such as candida.  They can ALSO be caused by neurological involvement and can have the effect among other things of embarrassing lack of urinary control.  Basically that decision splits two ways:  if you "leak" without sensation, it's likely a neuro issue.  If you "leak" with urinary urge present, it is likely to be localised involvement.  Here again you need - a qualified specialist who understands Behcet's.  If we all stood in one place with our medical teams present, there is not a likely place we could all meet and have enough space! 

Repetitive - or continual - oral ulcers can certainly be a sign of Behcet's Disease.  We say again, can be.  See our advice above about reading the international criteria carefully and making sure you are well documented in your medical records.  When convenient, take photos of readily available lesions and use a marker such as a familiar coin to indicate lesion size, for instance.  Make certain to date your photos for later reference!  For the nuisance (and PAIN!) of oral ulcers, many of us get significant help from the use of the drug Trental, (generic is pentoxyfilline).  Please note, it must be the brand name, not the generic version of this drug, and we do not know why.  Still others benefit from the use of colchicine, or some combination of corticosteroids, Trental AND colchicine - but it does not guarantee that the ulcers will stop completely.

A few of you have asked about long term side effects of prednisone, and there are to many to list.  You should already have been advised about the major ones already. The essential use of prednisone and that family of drugs is to calm the inflammatory process overall, much like using a blanket to douse a fire.  It is very normal to become symptomatic again while reducing dosage, and many people stay on the lower doses for years and years without those ugly and scary risk factors. 

If after reading the sections on this site you still have any unanswered question please send the question using the button below. Privacy will be respected at all times. We remain a non profit organisation and if we are to continue to provide this web site and services it is vital that we receive financial support so that we can continue to deliver a great product for an even bigger audience. With this in mind we have now introduced a nominal charge for replies to questions and to offset the increasing cost of running such a service.
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Due to the overwhelming success of this section and because the workload and administrations costs have increase dramatically it is now necessary to alter this section slightly. In just the last few months over 200 questions have been processed which take on average 30 minutes to reply to. Also many of the questions can be answered by researching this website. Because of this it is now necessary to apply a small charge of £3 per question. On submission of your details you will be sent an e-mail requesting the fee. Upon payment your question will be replied to.

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