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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?

3 Replies

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.


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.


Thank you,

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


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