Hello, Everything started 5 ...

Hello,

Everything started 5 months ago when i suddenlywoke up and my vision on my left side was blurry and i was seeing black spots everywhere. I went to an ophthalmologist and I did the blood tests he asked me to do and i was HLA-51 positive which raisesthe possibility of Behcets disease. He first diagnosed me with left uveitis. I have mouth ulcers too. He didnt give me any treatment because he said that it is not threatening my vision. I went again a month ago and told him that my vision is still the same but my mouth ulcers are the same. The problem is that they do not know uf its Behcets 100% because i do not have ulcers in my gentiles. So i do not have all the symptoms. He does not want ms to get any stereoids yet because the side effects are very dangerous...this is what he said. I dont feel tired and i do not have any pain in my bones. I have some spots on my thigh too ..and they really hurt but the do not know if they come from Behcets. I dont know what to do.... firstly, im really scared because i dont want to loose my vision...but he seems really cool and sure and he thinks ghat since it is not threatening my vision i should not take stereoids..secondly, i know that stereoids have many side effects...thirdly, i dont know what to do with my mouth ulcers....any advice please??? Do u recommend me to go to a dermatologist or dentist to see my spots and mouth ulcers???

Im sorry for bothering you...i just don't know what else to do!

Thank you!

[Jaxxi]

Genital ulcers are common in Behçet's but not everyone gets them. Fatigue and joint pain may only occur later in the illness's progression - or maybe not at all. It is an illness that strikes in a great variety of ways.

People who have Behçet's with eye involvement use various medications to keep it under control so that eye damage is minimised as far as possible. Steroids are only one of several options, which incude immunosuppressants such as azathioprine and biologics such as infliximab.

You really need to see a specialist with wider experience in Behçet's - not just the eyes - to firm up your diagnosis and discuss protective treatment. Do it as soon as you can. There should be no delays where your eyesight is concerned. Be forceful if you have to.

Where in the world are you? Here in the UK we are lucky to have 'Centres of Excellence' where we can see a range of specialists, but in many other countries Behçet's care is overseen by a rheumatologist.

[Hidden in reply to Jaxxi]

Hello,

Thank you for your reply!

I live in Liverpool. Could you please recommend me a doctor or specialist or hospital that are experienced with this disease?? That woul be very helpful!

Thank you!

[Jaxxi in reply to Hidden]

You are in luck! There is a Behcet's Centre of Excellence in Liverpool and it is run by Dr Robert Moots, who is one of this country's leading experts in Behcet's. It is probably best if you ring the centre yourself - talk to Joanne Kennedy on 0151 529 8123. Explain your position - especially your eye involvement - and I am certain she will tell you the best way of getting a rapid referral.

The Centre of Excellence's contact details are here:

behcets.org.uk/liverpool-ce...

Hope it goes smoothly! Keep us posted.

[Hidden in reply to Jaxxi]

Thank you very much!!

[Hidden in reply to Jaxxi]

How can i book an appointment with the doctor???

Sorry for bothering you!

[Jaxxi in reply to Hidden]

Ring Joanne Kennedy on 0151 529 8123 and she will tell you how.

[Hidden in reply to Jaxxi]

Hello,

I called them but they told me that my gp needs to refer me. The problem is that i already have a doctor from the royal hospital in Liverpool and i dont knowif i can ask him to refer me. Im not from UK and i have no idea how the system works. How can i go to this center (i really want to go because i read they are more experienced) and ask my doctor to refer me??

[Jaxxi in reply to Hidden]

Do you have a GP? A GP is a local primary care NHS doctor who works in a GP practice, not a hospital.

[Hidden in reply to Jaxxi]

Yes i have a GP. But again...do i need to ask my GP to refer me?? And if ask.. he will just refer me??

[Jaxxi in reply to Hidden]

Yes, you need to ask your GP.

Tell the GP that the Behcet's Centre of Excellence is centrally funded. The referral will not cost his practice or local health board anything. If he hesitates, give him the number for Joanne Kennedy on 0151 529 8123 and ask him to ring her for confirmation.

[Hidden in reply to Jaxxi]

Thank you!

[Jaxxi in reply to Hidden]

Let us know how it goes!

[belle623]

H

That's why we are here! Ask away. Yes, BD patients do not have to have genital ulcers. I diduuntil a couple months ago and have a possative HLA-51 since 2010. Yes, go to the dentist. They can prescribe a mouth wash and ointment for mouth ulcer. Yes, try steroids. However may I suggest Methlypred ? It has a lower list of side effects. Your ophthalmologist can also prescribe a steroid eye drop to help with you uvitus. Using preservative free eye gel ( Refresh) daily helps with the dryness.

Keep us posted and hope you feel better!

Ash

[Hidden in reply to belle623]

Thank you !!!

[sam0511]

Get to see an ophthalmologist immediately at hospital. Liverpool has a centre of excellence for Behcets. At the very least you need steroids - then a plan of treatment. I am on azathioprine, and it has stopped ulcers, migraine etc. I lost sight in right eye - am a bit cross that your GP hasn't referred you. It your sight for goodness sake. I stopped taking anything with anti-inflammatory properties and that helped regarding ulcers. Sorry if I sound abrupt - just been to the GP yet again. I have inflammation in remaining eye. Hospital next week to see how things are. Because of the azathioprine I am expecting things to be stable but we will see. Keep posting. Take care.

[Blearyeyed]

I have just read your post and I hope things have improved for you and you got the referral you needed, Could you tell us how you are?

I am just on the road of trying to organise a referral at the same Behcets CoE in Liverpool and have the same Uveitis diagnosis in eyes.

My opthalmologist prescribed me steroid eyedrops immediately and cooling eyedrops and a gel for nighttime. Your eyesight is important and delays in treatment should not happen.

I know the frustration from 11years of growing amounts of symptoms and no medical specialist even considering sending me to Liverpool even though they have mentioned Behcets in an off hand way as a possible cause for more than five years.

Until I asked for advice on this site and got a message from Tony at the BSS I didn't even know the Centre in Liverpool existed, or that I could be referred there without cost to my GP.

Please let us know how you are , you might want to read my original post and the kind advice I have received from others on it , it gives some good advice on dealing with getting appointments and doctors. You might also want to follow the Behcets Syndrome Society feed on here or go to their website , they have some great articles. If you want to send me a private chat please feel free, I know a friendly ear and a bit of support can also be helpful.

I could give you some more advice about dealing with appointments, eye care and diet to help your problems that I use too

Take care

Karen