Will I ever feel better: After a 10yr battle... - Behçet's UK

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Will I ever feel better

juliebover profile image
5 Replies

After a 10yr battle with random symptoms I finally have a diagnosis of Behcet's. Last year I was very ill with heart failure from myopericarditis and ulceration in my bowel. I'm on a cocktail of drugs but still feel so unwell

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juliebover
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5 Replies
BarbaraSteele profile image
BarbaraSteele

I am surprised no one has commented yet. I am the first. Yay!

I am new to BD. ( not new to the disease, but new to ever having heard of it) so I am not an expert.

Do you think maybe you and your doc(s) could go over what you are taking and see if there is something that you need to change doses or try a different med for?

I have never had heart issues, but I do know they can leave you so wiped out. My husband had something similar to what you had (fluid on the outside of the heart I think it was. It was caused by an infection. He was also battling mrsa.) but it was taken care of before it caused any other issues.

I hope you are feeling better soon!

AusBehcets profile image
AusBehcets

Sorry to hear you are dealing with that juliebover :(( How do they treat the myopericarditis? Did that follow from another illness like influenza? Just curious because my mother's mother had Spanish Flu around the time she gave birth to my uncle... then she got myocarditis & pericarditis. Makes me wonder if she suffered Behcet's...

juliebover profile image
juliebover in reply toAusBehcets

At first they thought it was caused by virus but then other organs started to be affected and they said it is autoimmune. Apparently rare to have heart involvement with Behcets...

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UKADMINPartnerBehcet's Syndrome Society

Are you in the UK?

juliebover profile image
juliebover

Yep. Under Guy's and St Thomas'

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