Newly Diagnosed & Feeling Overwhelmed - Behçet's UK

Behçet's UK

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Newly Diagnosed & Feeling Overwhelmed

Lubyluboo profile image

Hi all,

After years and years of symptoms and feeling as though I am going crazy, I have been diagnosed with Behcet’s. Of course I feel relieved to finally put a name to my health concerns and to know it’s not my mental health causing the symptoms (as suggested by my GP) but I also feel so confused not knowing much about it - I had never even heard of it before. I have been struggling more with my symptoms recently and cannot seem to find any self-help advice online. I am starting on Colchicine this week and am feeling nervous about this. Any advice, support or guidance from you all would be much appreciated. I hope you are all well.

Thank you,

Lucy

8 Replies

Hi Lucy - there should be some fact sheets on the Home page here. Every Behçet’s patient presents differently so that is one of the reasons it is so hard to diagnose. Also, one treatment that helps one patient may not be so good for another. Trust your specialist. By the way it is horrible that your GP suggested that it was mental health problems causing the symptoms, quite a few of us have experienced the same negative comments. Welcome to site!

Lesley

Lubyluboo profile image
Lubyluboo in reply to lesleyg

Hi Lesley,

Thank you for your reply and welcome.

I will look for the fact sheets as I would really like to gather as much information about BD as possible at the minute, thank you.

My Consultant seems really good so hopefully I am now in good hands.

Thanks again

Lucy

Hello Lucy

I have had Bechets all my life, but diagnosed 14 years ago.... I am not one for medication, so I just put up with the painful flare ups.

Then 7 years ago my husband passed away, and my Bechets hit me really hard, it was due to the stress. My sight went in my left eye overnight...(it took six months, and my sight came back)...my consultant had a word with me and said he was worried I was going to spiral, and asked me to try Colchicine. Starting on 2 tablets a day, which I did.

It helped very quickly, no more ulcers!... after 2 months I started to feel normal again, no more flare ups... but I did start to have headaches. So I decided to try 1 a day, and this has been great!... only have a little flare up if I overdo things... then I listen to my body and I just slow right down....

I am sorry to hear you have such a nasty Doctor... but I must admit, any health professional I have ever come across have never heard of BD....

Good luck and I hope they work for you the way they have helped me

Sasha-pi profile image
Sasha-pi in reply to Dolly-D

Hi Dolly-D,

Thank you for sharing your story.

I have also lived with BD for many, many years managing pain myself.

However, now for about a year the pain, head aches and eye pain is unmanagable. The flare ups are so much worse than ever before.

I am on a waiting list for one of the BD Clinic’s in the UK. Not sure when I will be able to see someone that can manage the pain and understand the symptoms.

I have been to so many GP’s over the last 8 years that just don’t understand that it flares up from no where.

Good luck to you all in managing day to day.

Hi Dolly,

Thanks so much for your response.

I am really sorry to hear about your husband and the trauma this must have caused you.

I have definitely identified stress as a trigger for me but you have given me some hope on the medication front, so thank you for sharing your success with it. I am starting on the lowest dosage of 0.5mg a day this week so fingers crossed it relieves me of some of my symptoms.

I really appreciate you taking the time to respond and share your experiences as I think talking to others who also have BD will help me to manage better mentally.

Take care

Lucy

Hi Lucy, Welcome to the group! If you are in the UK, there is great info and support from the charity Behçet’s UK and local support groups with some meeting over Zoom since Covid lockdown.

behcetsuk.org/behcets-medic...

I’ve had decades of living with Behçet’s and our daughter was diagnosed aged 4.

As encouragement colchicine has worked well for her; she’s now 10 and taking one 500microgram tablet one day, then half a tablet the next. “Start low and go slow” seems to be the key to that medication. Some patients are started on a high dose and have nausea and tummy upset which puts them off colchicine, but if you start a lower dose you can slowly increase to control symptoms. For some this is the only medication they need to control their Behçet’s ulcers etc so hope it works well for you.

I found useful medication info leaflets from the British Association of Dermatology. It is used in children for familial Mediterranean fever which reassured me that the specialists do prescribe it in children. Your GP will probably be more familiar with colchicine being prescribed at higher doses short-term for patients with gout.

bad.org.uk/patient-informat...

Best book on Behçet’s is a guide by Joanne Zeis which you can buy from Amazon. You could even gift your GP one, and invite them to the free annual “Behçet’s in a Day” conference when the Behçet’s centres of Excellence run them again, or the Behçet’s UK AGM if they could use some more info from the experts.

All the best!

Lubyluboo profile image
Lubyluboo in reply to Legomum

Hi Legomum,

Thanks so much for your supportive and informative message. I am from the UK, I live in Kenilworth. I have already ordered the book you suggested and glanced over the fact sheets. Will sit down to do some more research over the weekend so thanks for the signposts.

I have started the Colchicine now, and like your daughter, I have 500microgram once a day to start with. The first time I took it I woke up feeling like a had a hangover. My head was pounding and I felt awful. Feeling a bit better now though so hopefully my body will start to adjust.

It’s very strange about the Colchicine being prescribed mainly for gout as I have had it twice. I am a young, healthy (minus the Behcet’s) female and the Drs were baffled as to how I had it - I wonder if there is a connection to Behcet’s?

I have ordered the book you recommended, so thank you for that. I am hoping it will alleviate some of my anxieties about it all.

Thank you again.

Lucy

Here’s a link to the best book I have seen on Behçet’s and it’s massively reduced to £10 on Amazon at the moment! amazon.co.uk/gp/aw/d/193854...

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