covid19/Behcets: Is there any data on how many... - Behçet's UK

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covid19/Behcets

Chris-h
Chris-h

Is there any data on how many patients with Behcets have contacted Covid 19 and what the outcomes have been?

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TonyWT
TonyWTAdministrator

Dear Chris,

There have been few cases as far as we know - and that may be due to the fact that Behcet's patients are routinely careful about secondary infection, and doubtless decided for themselves to shield/socially distance way before any Government announcements were promulgated (like I did, merely because of my age!).

Here is a list of those that have been documented by the International Society for Behcet's Disease

behcetdiseasesociety.org/me...

Tony

Behcet's UK

Chris-h
Chris-h in reply to TonyWT

Thanks so much for this. I have mild form of the disease ,(mucocutaneous) and am on 1mg Mycophenolate daily. I'm regularly sending myself crazy vasilating between wondering whether to behave much more normally and being super careful. My son and partner are burnt out with two very young tots and want help which obviously I'd like to be able to do.

Could we have any updates of this sort of information if and when it occurs please?

Nice to know no one seems to have died especially as I read an online article about a young model with Behcets who was told the likelihood of her dying if she contacted the disease was 99.9%. Nonsense I know.

Legomum
Legomum in reply to Chris-h

that is a useful link from Tony!

Many reassuring stories; does sound like the Behçet’s patients were keeping safe by following advice to shield. That is how we lived for months as I have Behçet’s and our daughter does too. Stepping out again to shops and public places since the start of August but takes time to build confidence. We have a collection of facemasks (treat them like underwear and wash and change every day! ) and are selective which shops and public places we go to. So don’t send yourself crazy, just get out there and take the appropriate caution so you are still keeping 2m apart.

I think the immunosuppressants Used for Behçet’s May actually protect us from the Covid complications. Those who become unwell with Covid tend to crash around day 6-9, then get an overwhelming inflammatory response and clotting. I picture my immunosuppressant keeping me safe from that happening. Let’s hope the research in to the T cells also helps give answers for the mystery of our rare vasculitis.

Following. Also thanks for the link Tony that’s really really interesting!!

And me...

My COVID-19 story.

Hi Chris I have Behcets and I had symptoms of Covid which was later confirmed by a positive antibody test. I was diagnosed 3 years ago following a stroke at 45 years old from which I recovered. The blood clot which passed through the hole in my heart was thought to be caused by Behcets. I had other classic symptoms of Behcets several weeks following my stroke which resulted in the diagnosis. At that timeI was fit and healthy with no co morbidities.

I take Azathioprine to manage Behcets but at the time of having Covid in March I was not taking my Azathioprine due to previous closure of a hole in my heart (PFO closure) and subsequent illness which was unrelated to the PFO closure. However I was taking 20mg of prednisone to manage Behcets symptoms of fatigue and joint pain in multiple joints.

My presenting covid symptom was a mild cough lasting 3 days which felt like a tickle in my throat. I then felt fatigued and as though I my body was fighting something. I was then unable to talk in full sentences as I was out of breath this lasted over a week followed by loss of smell the taste which lasted for 2 weeks. I did not develop a pyrexia due to being immunosuppressed from steroids and previous Azathioprine. I managed to stay at home and my rheumatologist was very supportive ringing and texting me daily. The 111 service were not helpful and told me to stay at home until I couldn’t manage to breath then call an ambulance. I am a nurse and I would have not waited until that point to go to hospital as this would have been to late!! My rheumatologist was not happy with the advice I was given and gave me her personal mobile for 24 hour support.

Fortunately for me I managed to overcome Covid but I have had difficulties since. I have been neutropenic and low Wcc since March so I have been unable to recommence my Azathioprine resulting in Behcets flaring. I have had bacterial sinusitis treated with antibiotics, inflammation of stomach lining (Behcets flare) and shingles. Although I have recovered from Covid-19 my body is still suffering the effects. I remain neutropenic and WCC approx 3. I am due to speak to my rheumatologist to discuss plan.

I hope this helps 😊

Emma and Katy - Behcet's Patients at RLH - died within a few days of each other at Southampton Hospital where they had both worked as nurses. Twins in their 30's. Sadly missed.

Rosie70
Rosie70 in reply to traviata

I read this in our newsletter it was very sad and shocking news and made me realise why I was shielding. My thoughts are with their loved ones.

Thank you so much for asking the question! I've been trying to find any information I can about covid and behcets. I live in the US and am worried.

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