Behcets Syndrome and the London centre of Exce... - Behçet's UK

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Behcets Syndrome and the London centre of Excellence

Aerobobcat profile image
5 Replies

My own experience was mixed when I attended the Behcets centre in 2018. As a blood cancer sufferer I was referred by the hospital treating me to St Bart’s to identify if the symptoms I was suffering were due to my Behcets or my Leukaemia.

I had suffered from Behcets since childhood, at around 8 years I suffered from oral ulcers and in my early teens started developing genital ulcers. At 17 I suffered the first of many DVTs and leg ulcers plus many other symptoms and eventually prescribed lifelong anticoagulants.

From 1965 until 1990 my Behcets was treated by one hospital but from 1990 to 2000 my GP, having obtained fund holding took over my health care including my Behcets treatment.

It was around 2000 my symptoms were becoming more troubling and I requested a referral to a hospital for a review of my Behcets and it was they who diagnosed my Leukaemia.

I have been in treatment now since 2010 and this has included Chemo therapy, Radio therapy and currently I am taking the anti cancer drug Ibrutinib. During this time I have had 15 hospital admissions with Pneumonia 4 of which with Sepsis.

When I visited the London centre of excellence I was initially met by Dr Begum whom I gave a written summation of my medical health and history, dating from my original Behcets diagnosis.

She then examined me and noted 4 active mouth ulcers plus, quote “considerable scarring in the oral pharyngeal tissue and tongue”

I made the point that the ulcers she was seeing were most likely related to my cancer meds which cause me to suffer permanent mouth sores.

She then mentioned, quote “genitalia showed scarring from previous Behcets ulcers on the scrotum, penile shaft and groin”

Again I made the point that I had not suffered from genital ulcers since my mid 30s which coincided with the onset of my joint problems.

I met with other clinicians including Professor Fortune, she explained to me that Behcets arthritis is unlike any other, saying If I were to open up a joint you would not see any physical damage.

I also met with professor Jawad and it was he who said my Behcets had burnt out, adding if I were to visit the Behcets hospital in Istanbul I would not find any man of my age (69 at the time) suffering from Behcets.

To finalise I have been a member of the Behcets syndrome society since 1988 (34 years) and their description of Behcets is a rare, complex and lifelong condition.

I do know that some other sufferers have similar experiences, it’s my belief that the absence of active ulcers leads to this outdated burnt out definition.

What I do know is that as one symptom diminishes another develops and this has been my experience and fits with all that I have read regarding Behcets syndrome.

.

5 Replies
Oathy profile image
Oathy

Thank you so much for posting this. I am catching up on the internet in General

this is my biggest fear of the centres. I roughly take 30 tablets a day and 4 topical treatments for the skin it took 14 years to finally get some control over the symptoms. If I leave everything off within weeks it all comes back, Again like you one of the consultants who is Turkish said it should be showing signs of burning out, but its not. I had to relent and see a local consultant to get the Thalidomide and Anti TNF treatments and I actually had a face to face meeting with him tonight, The Scans came back showing noticable scars in the rectum and lower bowel, yet even after trying to explain there will only be active signs when I bleed etc. He then all of a sudden said he wanted to move be onto someone else, This is after months of the local health board saying this guy would just fill the gap till I find someone more long term. Its the constant need to keep proving really is grinding me down because a consultation takes upto an hour, but if i let the treatments drops it takes months to get it settled. aug 27th had a massive bleed because there was a delay in the anti tnf within days the bowel looked like nothing had happened yet needed 3 units of blood. The consultant sent off some letters to other doctors outside the area to see if they would take over the role ones in london left, so far not one reply. Which shocked me, sorry for rambling I do know excactly how you are feeling and its not nice. You please take care

Aerobobcat profile image
Aerobobcat in reply to Oathy

Hi Oathy, firstly let me say there is no need to be sorry for as you put it “rambling” from what you are suffering. You mention the Turkish guy who mentioned the burn out was he professor Jawed?

Aerobobcat profile image
Aerobobcat in reply to Oathy

Sorry I accidentally hit the reply button before I had finished my response. I was about to say that professor Jawed was the clinician that I met who said my Behcets had burnt out, this is an outdated view nowadays. Current thinking is that Behcets is a life long condition but as one symptom diminishes another can appear and this has been my experience.

Lastly, I thank you for your response, I had assumed that there would be a number of people with similar stories but I am pleased you responded.

In the meantime I wish you well and hope you get the treatment you need.

Oathy profile image
Oathy

It was a Dr Kaplan then Dr Colaco. Then I had the good luck of a consultant locally who spent 6 months of the year in the UK then the other 6 months in Jordan, He knows Behcets very well and was the one who actually told the team in london why the issues around my backside were not going away, Its utterly insane how fast things develop then just days later vanish like it never happened. It took so much actually trusting someone at the local level

just to manage the established treatments till I find someone longterm and within months

they want out. Apart from the bleed its actually a lull and they just cant deal with it.

I know given what's unfolding I need a centre but terrified

Aerobobcat profile image
Aerobobcat

Thanks again, were the two doctors you mentioned practicing at the London centre of excellence? Also I understand your worries and fears but there are many people on this forum whom have had a good response from the various centres of excellence, so if I were you I wouldn’t give up all hope just yet.

My best wishes

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