Coronavirus / COVID-19 + Bechets: Hello. I hate... - Behçet's UK

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Coronavirus / COVID-19 + Bechets

KF15
KF15

Hello. I hate to bring the C word up but, with the virus clearly not going anywhere and spreading across the UK, it’s been playing on my mind and google is no help in this area.

My husband’s had his diagnosis of Bechets for several years now. He’s been very lucky and hasn’t had many flare ups.

Has anyone looked into or asked any drs about the implications of someone with bechets getting COVID-19? I don’t suspect my husband has it or anything but I’m a planner and maybe a bit of a worrier and like to be prepared.

Thanks in advance.

14 Replies
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Being prepared is wise.

I'm not a doctor but I reckon the degree of risk will range widely from person to person.

First there is the risk of catching the virus, which will obviously be increased for those on immunosuppressant medication. Then there is the risk of covid-19 and Behçet's exacerbating each other. I suppose the Behçet's researchers in their various countries are looking for patterns, and hopefully Behçet's professionals in this country will let us know if anything conclusive emerges.

In the meantime, I think we are definitely among the group of people entitled to 'bother' our doctors for advice, especially people on immunosuppressive drugs.

Hi, I don't have any advice so I'm sorry about that but I just want to let you know I too am worried. I have behcets and crohns and on various immunosuppressants and it's just causing me so much anxiety. I think the best thing we can do is be extra cautious about avoiding crowded places and washing hands regularly. Also eat healthy foods and plenty of water. I hope your husband keeps well.

I was with my rheumatologist only yesterday and the same advice was given for everyone else which is only what Iexpected to hear. I would just suggest to be extra extra vigilant especially if your husband is like many of us taking immune suppressants. I have taken to wearing a scarf over my lower face in public places.

I have currently had flu like symptoms for the past 10 days and it is taking an age to shake off, thankfully I have not experienced a fever and the GP was not too worried about me, I did wonder how this would be if a person had seasonal flu and if the risks would be much greater for dealing with coronavirus.

Hello there, I have also been worried. 10 years ago when Swine Flu was in the news, there was a vaccine and I was on the priority list.

This time, there is no vaccine. I've read that it could be a year away for a vaccine. So, all we can do is be cautious about going to places with large volumes of people. I'm already avoiding anyone in supermarkets if I hear them cough.

I'm already thorough with hand washing. I also have disinfecting hand gel in my car for after handling shopping trollies. I'm also aware of keeping tissues with me and not putting hands to face when handling a shopping trolley.

I'm following Coronavirus on my Twitter feed @TheStephenRalph from the perspective of vulnerable health groups.

Face masks, like the ones seen in hospitals, are not very useful. They were designed to keep germs in the wearer and not germs out. Viruses are so small that a porous paper mask are not a very good barrier. I say that as a former NHS radiographer.

We really do need a vaccine and I hope all health and elderly care charities will be pushing for a vaccine in the coming months to help reduce the impact of getting infected.

If you think you have been affected, then initially, self isolation is essential. Letting your GP know by phone is also essential.

I was at my docs today I asked about this basically said be very careful it's not in my region yet but if and when it does I won't go far unfortunately my wife is a nurse as well and she's unsure of what her duties will be regarding contact with patients ect especially with my condition as well as betchets I have mylodyplasia and now probably heart condition all I can say is stay safe as possible

Saw on the news earlier that a vaccine is approximately a year away. Backs up what I've seen elsewhere on Twitter.

Back in 1996, I picked up a flu like virus from a Tunisian national who was ill on the plane on the way over from Tunis. I got that Flu virus 3 days later and I was very ill for a fortnight. I remember having cold sweats fully clothed in bed. Two weeks after recovering I got a massive flair up that was eventually recognised as being Behçets. That ended my career as a radiographer. I've never gone into remission. So, I'm very worried now. Am dreading what might happen if I do get COVID19. 😔

HiddenThis reply has been deleted

I don’t take immunosuppressants (I have so far been lucky with my flares), but I have been wondering what the impact a virus would have on my Behcet’s. Anyone had any medical advice on potential implications?

I am also not a doctor but when I or anyone in my family gets sick, if the sinuses are involved, I always add the original Sudafed to the night time medicines taken before bed. It’s supposed to dry your sinuses out and I feel it helps to keep your sinuses from draining down your throat all night. Since one difference between the regular flu and the Corona Virus is that the CoVi moves to your lungs, I feel it may be helpful. One doctor told me, years ago, that it doesn’t work that way but my son, when little, had pneumonia once and bronchitis twice when his allergies flared up. I started giving him Sudafed at night during allergy season and it never happened again. (Until he grew up and decided he didn’t need it and guess what? Bronchitis again. He’s now a believer:)

Anyway, here in the States, I’m not hoarding toilet paper but I do have a supply of Sudafed now for when we get the CoVi.

And yes, I do worry about Behcets and how it will be when I get the virus. I’m going with the eat right, exercise, get the appropriate amount of sleep, and just take care of myself...be healthy. Really, what else can one do? Oh, and drink plenty of fluids:)

gillianTS
gillianTS
in reply to muttiof3

Can you send me a link to the exact sudafed you are using please, find whst you have written about this interesting.

Gillian

muttiof3
muttiof3
in reply to gillianTS

It’s Pseudoephedrine HCl. 30mg. (I took it right off the box)Sorry, I’m not exactly sure how to send a link or a picture of the box. Are you in the US? This is the original Sudafed and in the US, you have to buy it from the pharmacist, show your driver’s license, and sign for it. We’re allowed 96 pills/month on Washington State.

Sorry it took me so long to respond and hope this helps🤓

muttiof3
muttiof3
in reply to muttiof3

The warning in the box does also say to not use if you are taking prescription MAOI’s

Https://mentalhealthdaily.com/2014/08/19/maoi-list-monoamine-oxidase-inhibitors

Look a link...duh, I guess I figured it out...

drugs.com/otc/113693/suphed...

Hope that works.

Does anyone know about someone taking corticoids (Predsim) as treatment for Behçets have any risk if contaminated with covid-19? Because the tratment with corticoids can't be stopped, or everything will be inflamed. We're worried if the pneumonia can start an inflamation in the lungs and not be cured... or the illness (covid-19) itself be worse on Behçet's pacients than regular ones.

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