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Crohn's Disease Forum » Extra Intestinal Manifestations » Epidermolysis bullosa aquisita - EBA


04-17-2016, 02:25 AM   #1
Bobbie
 
Join Date: Apr 2016
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Epidermolysis bullosa aquisita - EBA

Hi
I was diagnosed with EBA in 2013, a rare skin blistering disorder which is an extra intestinal manifestation. It is a horrific condition and like crohns there is no cure, although there are periods of remission. Mine started out of the blue after stopping the drug mycophenolate mofetil, which wasn't working on my crohns. Within a matter of weeks my whole body was covered in red marks or blisters, which were extremely itchy and painful. It also affected my oesophagus and inside my ears and mouth but fortunately not my eyes. It took a long time to diagnose despite seeing so many specialists and having biopsies. Luckily a London specialist diagnosed it and put me back on mycophenolate which eased the symptoms gradually. Later on I was put on to Dapsone but reacted so I'm still on a high dose of mycophenolate. Immediately following a hemi-colectomy in 2014 my skin cleared for almost a month, which was miraculous, however it was short lived as my crohns came straight back and it was obvious the bowel was driving the EBA. I currently have no blisters but I'm covered with scars, red open wounds and scratch marks all over. The itching is so intense, when it was at its worse I was hospitalised, given IV steroids and sleeping pills, none worked. I'd be interested to hear from anyone else who has IBD and EBA as most Drs I meet haven't heard of it. I'm about to start Vedolizumab in a few weeks to help my crohns so hoping this will help my skin and arthritis.

Many thanks for reading my story.
04-17-2016, 06:13 PM   #2
FrozenGirl
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Wow that is quite a story. I really hope Entyvio works for you.

Question if you don't mind: how did you find mycophenolate mofetil in terms of side effects etc? I had to stop azathioprine and in looking it up this may be an option for me. Also how much did it cost?
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04-18-2016, 01:48 AM   #3
Bobbie
 
Join Date: Apr 2016
Location: United Kingdom

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Hi

So far I've not had any reactions to Mycophenolate but it hasn't done any good on my crohns but saying that everyone is different and I know someone else who thinks it's working well on him. I've reacted to every other drug I've been on but not this one. I'm in the UK and have it on prescription so I don't know the cost. Good luck
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