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
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
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
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.
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