10 years of BD: Hi there new to the site, 1... - Behçet's UK

Behçet's UK

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10 years of BD


Hi there new to the site, 10 years ago I started suffering with problems with my right eye blurred vision etc i went to the optician and was told I had macular degeneration I was gob smacked when told nothing could be done and it occurred in older people usually.

Went to see my GP who referred me to the ophthalmic clinic in the local hospital 6 months waiting list and my right eye was getting worse by the day! Decided to go private and £3000 later on steroids etc my right eye was bleeding so bad I had to go for laser surgery on the eye to stem the bleeding, finally i got in to the NHS system! No one could tell me the cause toxoplasmosis was the obvious cause to the ophthalmic doctor but no drug except steroids worked.

The worst day of my life and the most frightening, on a Saturday morning i woke up totally blind and admitted to hospital for all kinds of tests one foreign doctor that I saw after three days said he had seen these symptoms before and the disease was called Bechets no one Else agreed with him, but after a week the rheumatoid professor and his team agreed this could be the case. Vision recovered to left eye but right eye beyond repair all kinds of drugs tried and on warfarin but only steroids kept the symptoms at bay.

I was referred near Christmas to Professor Phil Murray at Birmingham hospital and having looked at my notes his secretary phoned and explained that this symptom seemed very aggressive and he would see me within a couple of days as the Christmas holidays where approaching. I spent he day at his clinic and I will be forever grateful to him and his staff for that day, he confirmed that I was suffering from uveitis because of the Bechets disease and mentioned that they had great successes with Imfliximab.

Came back home and met with the professor of rheumatology at my local hospital and fair play to him arranged for me to go on Imfliximab as a experiment with Manchester university successes! After six months I was on 8 weeks cycle of Imfliximab and 7.5 mg methetroxate per week instead of taking 22 difference pills per day and symptoms stayed stable.

So far I have been very pleased with myself as I work as a skipper of a fishing boat and in ten years I have had 4 weeks off sick because of his illness felt shit many a time but fought through it, two years ago imfliximab was wearing out at seven weeks so cycle changed to six weeks treatment.

Last three months white blood cells count up by a bit but today's results came back that white blood cells count are very high I do not feel as as I have any infection etc but. Do have a bad feeling about what they will have to say Next Tuesday when I see the consultant and get my infusion.

Twitter. W J Jones. @Wjj66W

20 Replies

Hi Ostrea

Welcome to the group. You are an inspiration having kept working!

On the other hand consider pacing yourself - you don't want to wear out your body and undo the treatment which has been working.

I am considering early retirement, but intend to keep working at a slower pace.

Cheers Lesley

ostrea in reply to lesleyg

Thanks Lesley, I think I must be one of the lucky ones with the illness to be able to work, but if I am on a day off it is so easy to sit in a chair with a coffe in the morning and stay there all day, and I usually feel worse for it.

Plus I am lucky that I have an excellent employer that arranges everything around my infusion and hospital appointments.

God bless you sir. My heart is with you as I have double vision and very little sight in my left eye. I am very concerned about going blind. I'm an artist, so I guess I won't be able to keep working if that should happen. I wish you the very best and my prayers are with you.

hello and welcome, not only do we have behcets in common, we too are under the same consultant prof murray. i too had a similar situation. woke up one morning with excrutiating pain to my right eye, unable to even look out the window from the pain i would get from the day light. long story short, seen a few doctors at A&E they kept giving me anti biotics which obviously didnt work.went back to the gp still having a flare, a doctor i dont normally see, and said straight away uvities i was sent straight to dudley road hospital. there was an australian doctor there who said he had seen behcets before and suspected thats what it was.

i got in to see prof murray within weeks at the behcets clinic where he and rheumatologist dr sytanakye confidently gave me my diagnoses of BD. i was utterly devestated at the time due to only being 19, but i think a positive attitude helps, litterally. and you couldnt be in better hands proff murray knows hes stuff when it comes to BD. XX

ostrea in reply to mybehcetsxx

Thank you for the reply, as you said devastating news but I was also glad that someone had finally been able to give my lines a name and start working on a treatment.

Have not seen The professor for many years now as I live in N Wales but I did email him for some advice last year and his reply was very helpful.

For me you have to have a positive attitude and stick two fingers up at this disease and a can of Red Bull usually helps!

Great to meet you!

As Lesley says what an inspiration that you've kept up such an active job.

There are others on the site from the North Wales area.

I came to Anglesey last year for a bit of recuperation, and sadly the sea was too rough to get across to Puffin Island which is high on my bucket list.

I have this vivid picture of you guys out mussel dredging.....I swear I could live on mussels, lol.

I just managed to return to work and I do agree that it forces you to be active (in a good way)

I understand your concern, as it seems infiximab helped to keep you active.Dependant on what your rheumatologist says, you could always get a referral to the Birmingham Centre of Ecellence. The wait time is around six weeks.

There are a few of us on the site who live in and around Brum, so let us know and we can meet up at the Costa Coffee in the hospital.

I'm not sure if you have ever met anyone else with Behcet but its been a very positive experience for me meeting upbeat characters who have been dealing with Behcets for over 20 years in some cases.

Anyway, lots of lovely smart people on here to bounce experiences off, so a warm welcome, Jill

ostrea in reply to goodlife

Thanks Jill, I have only met one other person with Bechets local to me at the hospital unbelievable she was at school with me!

We are based in the Menai Straits with the mussel dredger with one of the mussel beds opposite Beaumaris pier.

This is a link to a welsh programme filmed a while back with a woman spending the day with us to do a mans work we are on 15 min in to the program I think there are subtitles. s4c.co.uk/clic/e_level2.sht....


ostrea in reply to ostrea

Sorry I think that was the wrong link, s4c.co.uk/clic/e_level2.sht...

Welcome John, hope your news isn't to bad next Tuesday my thoughts are with you. My daughter has BD & my number one no no is to let her get run down or tired. Now that Jaida is 10, she is able to recognise when she is overdoing it. It's about listen to your body best you can and pray the meds keep working.Good luck. Michelle

John, I loved the film (even though there were no subtitles) I really do love mussels and I had no idea how they were caught before. I was quite fascinated with what happens as the mussels go through the conveyor belt, and that was the bit where subtitles would have been handy.

I fell in love more than a little with Beaumaris and stayed in a wonderful tiny cottage near the fire station. I was still very poorly but the film reminded me of how lovely it was.

I was unable to walk down the pier but I have promised myself I will go back.....I also love Puffins almost as much as mussels and want to go and see the Island.

John I saw a little island with a house on it on the menai straits, apparently you can rent it....do you know the name of it ?

Thanks so much for sharing that John :-) Jill

ostrea in reply to goodlife

Hi Jill thanks for your comments, the island you saw between the bridges is called Ynys Gored Goch it has a long history if you look it up on Wikipedia.

this link has the rental information. avander.co.uk/detail/ynys-g...


Hi John Hun,

Thanks for coming onto the site and telling us your story. It is just so typical of so many backgrounds we here about and mine is similar as well.

I was an IT Consultant based in the south of England when the first real major problem that can be linked to BD happened. As you can probably imagine, I was dashing all over the country sorting out company's computer systems and doing everything from speaking at conferences about the latest system on the market to grovelling around under someone's desk trying to find a spare plug hole to get an off line terminal working again so a very varied and hectic schedule which meant very little time to relax and rest.

I was 40 at the time and dashing round the M25 at a rapid rate of knots at 6.15 am along with the other mad commuters and suddenly the sight in my left eye went completely. No warning, no pain just suddenly black. My right eye went into spasm as a reaction tot he left ones trauma and so any eyesight that was left was blurred and just wavy lines which moved and twisted which ever way my head was turned. I was very lucky to be very near my exit by only a couple of hundred yards and somehow managed to slide off the motorway and straight across into my company's car park without hitting anything on route. Now scared shitless and in a complete panic, it was up to the people who had witnessed this strange entrance to get me out and sort out what needed to be done.

I don't recommend anyone having a go at this one and it still leaves me cold at the very thought of what could have happened to me and lots of other people if I had been just seconds further away from an exit. It really doesn't bear thinking about does it. Anyway, I was diagnosed with a central retinal vein occlusion that took out the best part of my sight in my left eye that has never returned and the right one recovered enough over a year later to allow me to see well but by then all the other symptoms of BD had started to come thick and fast and it was actually nearly 2 years later that it became apparent that this event was the last day that I would ever work again. Looking back I can see that I have actually had BD for the whole of my life with undiagnosed symptoms and strange illnesses that cropped up.

I am now 55 and my symptoms are such that I need to spend most days on my bed but I do get out and about in my disability car with my OH who is my full time carer and spend our time generally up and down the North Wales coast and over Snowdonia enjoying the beautiful sights and the lovely people who live there. I now live in Rhyl and have never looked back after putting the mad commuter world behind me for good.

So my friend, I am in the same general local vicinity as you and when the summer eventually comes along, we should arrange to meet for a coffee or something and say Hi. okay ?

I attend the Aintree C of E with Prof Moots so we can compare notes on the 2 different centres and put the world to rights !

Keep in touch Hun ! So pleased you came on to say hello !

Tootles for now, XX :)

ostrea in reply to xandii

Thanks for sharing your journey through this illness, I have my treatment at the Llandudno Hospital down the road from you.

I consider myself unlucky to be suffering from BD but also so far I am still able to work full time and at times 10 days at sea without stepping ashore, some days I have to dig deep and get on with it but the week before imfliximab (my go go juice as i call it) always the worse.

I am totally convinced that stress and pressure of work brought the BD to the surface for me so these days I try not to let anything get to me and as long as we catch more mussels than the other boats always gives you a high.


John, oh my goodness this isn't the island but I have fallen in love with it and sent off an inquiry, my bucket list grows longer by the day which can only be a good thing!

The other island could be reached by car from a private road, which appeared not to be covered by water....so I guess its kind of not an island.

the house was surrounded by trees and you could only get glimpses of it, far less exposed than Ynys Gored Goch. We were able to sit in a layby on the coastal road a couple miles away from Beaumaris headed towards some secret gardens that were shut....

Not sure of your age, you look the same as us on the film....40's? but as a girl raised on Enid Blyton the Secret Island we have now reached a point in our lives that BD or not I want to live out as many dreams as you can.

My best friend bought me a bracelet that says "Live as you dream".

Thank you so much for the links they have really fuelled my interest in that area.


Hi Jill glad you liked the link to Gorad goch I will try and find more info on the other one Tom one of the crew lives outside Beaumaris.

You are right about the age 46 years two grown up kids and celebrating 25 years marriage in June just booked a weekend in Barcelona but made sure it was a week after my imfliximab!

Well got to see my consultant this morning she looked at my blood results and white blood cells on the rise from September last year, She gave me a full check up and on the face of it can not see anything obvious so agreed for me to have the infusion but also more blood taken for tests and chest X-ray and referal to my opthalmic doctor as i have not seen them for a while, and mentioned posibilaty of going back on warfarine but i am dead against that so agreed for now half an asprin a day. But typical had a message while at X-ray that my imfliximab had not arrived from the other hospital so Back there tomorrow for infusion and wait for results of X-ray bloods etc.

At least it's a nice day sat in the garden typing this on my ipad.


Hi John

You probably said but how long have you been having infliximab now? My brother is having it for sarcoidosis and says he can feel it as it wears off and is time for his next infusion.


ostrea in reply to lesleyg

Had my imfliximab today, been on it for 9 years first 8 years every eight weeks but week seven symptoms started showing so was reduced to 6 weeks.

My brother has been taking it for quite a few years now and it works for him. I took it for nine months but unfortunately it didn't kick in.

Cheer Lesley

Ps tried the link for the mussel fishing but left it too late, it there any other way to see it such as YouTube?

ostrea in reply to lesleyg

Hi I think the link has another 12 days left we are on it around 15 min in s4c.co.uk/clic/c_level2.sht...


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