Behcets Syndrome/disease.

[squirtle]

Is there anyone on here who is familiar with Behcets, or know anyone who has it?? If so how did they first come to know they had it, as in what symptoms did they first get etc? And how often do they get flare ups and what causes the flare ups? I suspect I might have it from recent symptoms, my GP is considering sending me for tests, i want her send me so that if it isn't behcets then we can rule it out. So just after any stories, advice etc

[sqad617]

In a nutshell eye problems(uveitis) mouth ulcers and genital ulcers.

I haven't had it, but have been involved in it.

Go for your tests, because there are many conditions which mimic Behcet's

For mor information then Google it.

[Eve]

I was going to say pretty much the same as sqad, it's pretty rare and other conditions can cause similar symptoms so best to get te tests done and see what they say.

There's a skin prick test if I remember right.

[beaniesq]

Hi there, a colleague of mine had it.

She got lots of large mouth ulcers and had very arthritic and swollen joints in her fingers, hands and knees.

Once diagnosed, she was put on a high dose of a non-steriodal anti-inflammatory drug and she made a very rapid recovery.

It sounds a very uncomfortable condition to have, so I wish you luck with your treatment. Remember to ask your GP to see a specialist Rheumatologist, who is better placed to treat your condition than your GP.

[squirtle]

Thanks for your replies

I had mouth ulcers about 2 months ago and a very large painful genital ulcer -after numerous tests from the GU clinic they eliminated Herpes virus and every thing else GU wise. (the ulcer became infected too)

I saw a Gynaecologist who said the ulcer was superficial, and he gave me some cream and eventually it cleared up leaving scarring..........i saw a phyisician who said the ulcer was due to a very invasive form of bacteria. Although i ended up seeing a lung disease specialist and not a general medicine physician. (Gp can't understand why).

About 4 weeks later i had stinging sensation and suspected genital ulcer was flaring up again, so was back to gyny and he said it was because it was time of month.

A week later i was back at GP as there was definitely a new ulcer forming - when looked with mirror i could see 2 possibly 3 or 4 forming. I also had mouth ulcers again, and strange looking spots on the side of my upper body.

GP said could possibly be Behcets, when I had blood tests during first ulcer my ESR rate was slightly higher than normal. My GP was going to contact Gynaecologist again. She mentioned seeing a rheumatologist but never followed up with as to whether she was going to contact them.

I don't want to self diagnose from the internet and i realise my symptoms could be something else.............but I seem to be the one pushing for tests here, should i see a different GP?

The gynaecologist has me down for another appointment in 2 weeks but this is a follow on from last time so they may not know i have other ulcers. They said they would take a biopsy if i still have symptoms.

I really feel frustrated with all of them.

[sqad617]

squrtle....I can understand your frustration, but the diagnosis of Behcet's can be time consuming, as I said in my previous post, it can mimiic other disorders.
bienesq mentioned a colleague who was diagnosed with tis condition who was given NSAID's, but this is rather confusing, as the treatment of Behcet's is high doses of steroids NOT NSAID's.

Biopsy may give a diagnosis, but please understand that it is not easy for the medics to come up with a definitive diagnosis.

[squirtle]

squad617

I realise it takes time but i started with the ulcers at end of february and there just seems to be no rush thats all. My GP doesn't seem to listen much to what i am saying to her, but i don't want to be offensive with her either. If it isn't Behcets (which is the only thing anyone has mentioned so far) then there seems to be no other suggestions as yet from anyone. And she never told me her suspicions anyway i heard it from the gynaecologist when i asked what this syndrome was due to a friend showing me a magazine article.

The doctors in the GU clinic who gave me tests for Herpes Virus were lovely, caring considerate and didn't make me feel like i was wasting their time. They rang up and said the tests were negative and they hoped i would get sorted and that i should take care.

At the GP's I had to ring for blood test results as no one volunteered them to me, I asked if there was any way i could find out what may have caused the ulcer - initiating the appoinment with the physician.

I explained to my GP how i also had like acne/rash around my nose which i don't usually get and all she wanted to do was prescribe me some blummin cream rather than see if it all might be linked.

Ok i am getting frustrated again.......sorry.

[Eve]

It does sound possible but autoimmune diseases like Behcets can take a long time to diagnose and it's often by a process of elimination and ruling out the simple and more obvious/likely first.

Diagnosis for these kind of syndromes can also require a time period showing patterns of symptoms so it can take time for this to be shown and medically evidenced.

Keep a diary and pictures so you can show anyone you are referred to evidence of the ulcers and spots, especially if they aren't present when you see someone (often the way).

Try not to compartment your symptoms though and fit the diary to a condition, log them as they are generally.

Some people are prone to bacterial flare ups like ulcers and boils. I have recurrent ones in my groin, especially when I'm coming down with something and they looked at more common causes first like diabetes, hydradentis superativa, PCOS etc...

In the meantime just make sure your hygiene around affected areas is spot on, antibacterial body washes like Sanex or Carex are good and bacterial killing mouthwashes, flossing etc... and making sure you keep the groin area from getting warm or sweaty eg looser clothes and cotton underwear.

If you have a gynae appointment then ask them about the possibility as they should be able to refer you internally if needs be (my rhumatologist referred me to gastro internally when they suspected my arthritis could be caused by Crohns or similar).

[sqad617]

squirtle........push for the biopsy as soon as a lesion appears, either in the mouth or vulva.

Not a satisfactory state of affairs, but not an uncommon story in the UK I am afraid.

[beaniesq]

Hi, I know it's frustrating and it's hard to ask for these things from your GP without feeling like you're being confrontational or telling her how to do her job.

However, as Jenna said, you can ask your gynea specialist for something called a Direct Referral. That means she contacts the Rheumatologist directly.

The tests that need to be done to confirm or rule out Behcets can really only be done by the rhumatologist. ESR tests don't tell anyone very much - they are just an indication of swelling/inflammation etc somewhere in the body. An ESR is a very non specific test.

I don't think you should change GP just yet. Just be honest and tell her you've done some research into your symptoms and you feel that you do need to see a specialist, as she herself mentioned earlier.

I really hope you're able to find a solution soon because you must be feeling lousy at the moment.

[squirtle]

Jenna

I will keep a diary as such as usually when i have an appointment and ask when did the first ulcer appear, i am like erm well about 2 months ago. So i will do that, pictures may be a little more awkward without a third or fourth hand. I could ask my boyfriend but not keen really on doing that.........

[squirtle]

sqad

I know that GP's all over the country are the same and i also know they are not miracle workers. However this particular Lady (1 of 2 in the practice) once asked ME what cream i would like to try next when i said my current Psoriasis treatment didn't seem to be having any affect.........now i was hoping she could recommend one to me.

[squirtle]

beaniesq I know the ESR is pretty Non specific, but i was just putting it all together really, the blood tests, the ulcers, i also have bowel issues..........i also know it could be something else, but imjust get the feeling if i don't push these people my problem will be forgotten about by the GP. There is not a great deal of communication between the surgery and me on their behalf.

I am pretty fed up as it affects me not knowing what could be the issue (if any). But i shall carry on regardless and see what happens.

[tamirra]

Hi, not sure if you will get this post as yours was posted last year, but my daughter has just been diagnosed with Behcet`s so if you would some info on her symptoms let me know. XX