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Behçet's UK
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Heart issues - Pacemaker ? endocarditis

I was diagnosed with Behcet's last year. The most significant features has been the ulcers, red rashes in the mouth and a sore tongue and lips which did not improve with colchicine or steroids but is improving with Plaquenil. I have HLA B5.

I also get little red sores on my arms, legs, scalp and neck. I get stinging nodules on my fingers and splinter haemorrhages on my thumb nails. These symptoms are sporadic.

I had a pacemaker put in in March 2014 for an arrhythmia that caused my heart to stop. Later that year night sweats started. They are unusual because I have normal temperature, pulse and blood pressure during the sweats. Many investigations have failed to find a cause. My bloods are good and apart from getting breathless going upstairs I am healthy.

A recent Trans Oesophageal Echocardiogram revealed a mass or vegetation on one of my pacemaker leads. My blood cultures were negative.

The cardiologist and I agreed that my condition is "complex" . The rarity of the signs, symptoms and general presentation makes it very difficult for case management and treatment.

Has anyone else had heart issues like this?

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I am so sorry you are suffering this - unfortunately I have no advise or experience of any of your symptoms, however I empathise with what you say in the last paragraph rings so very true. I am experiencing things now which could be Behcets related, but it is the uncertainty of the whole thing that I find the most isolating. I hope you find some answers and treatment quick. Genuinely wishing you all the very best with this.

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Good afternoon Asteroid, thanks for posting. Your Cardiologist may want to discuss your case with your Behcet's doctor / specialist. If you are in the UK, the Cardiologist may want to consult one of the Behcet's Centres of Excellence. This is a link to our Factsheet on Behcet's and the Heart: behcets.org.uk/wp-content/u... Best of luck to you.

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Thank you,

I am in Sydney Australia. I will let you know how I get on

cheers

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