Coronavirus, how deadly

[stuc]

Hi all

Has anyone heard how probable it is that you will die if you catch the virus when immunosuppressed.

I have GPA, currently taking azathioprine, age 52

Stewart

[May7]

Hi Stewart,

I fully understand your concern. I have EPGA with Bronchiectasis, together with airway obstruction, as well as many other chronic conditions caused by vasculitis. Being immunosuppressed on top of all this terrifies me. At 70 my age doesn't help either. No official information covers all these bases, leaving us frightened.

[stuc in reply to May7]

Thanks May

[gilders]

The only statistic at the moment is 1-2% expected death rate. But, as that covers the full spectrum from fat and young to old, to chronic lung conditions, to the immunesuppressed, it's not a useful number.

Below 20 and fit are EXTREMELY unlikely to die. People above 80 are MUCH more at risk.

Sterwart, as you are on azathioprine you are probably only mildly immune suppressed (unless you're on an unusually high dose) so hopefully will be ok.

May7, you're probably slightly more at risk with your age and lung involvment, as well as being immunosuppressed.

I am not sure if there is a point where if you contract Covid-19 and are very unwell, where drs may think the risk of Covid-19 is so great to your health that they advise you to stop your immunosuppression drugs to help you fight the virus (but putting you at massive risk of flare/relapse of vasculitis). For me, I would also almost certainly lose my transplanted kidney if I ceased medication.

Although I am 42, I would consider myself at VERY high risk. I have COPD and scared lungs from vascultis. I had a kidney transplant last year (due to vasculitis) and as I have an antibody against the donor kidney, I'm on an extra type of anti-rejection drug (Immuno-suppressants) at a much stronger dose than vasculitis patients.

Before the transplant my vasculitis Dr had no issues about the transplant going ahead due to vasculitis and actually believed vasculitis patients did very well after transplants. But he was very concerned about how I would cope with viral infections. I have been immuno-suppressed for most of my life since 17 (25 years). My Dr said that with strong antirejection drugs I'm at a much higher risk when it comes to fighting viruses.

I could keep fairly safe by limiting any potential exposure, but as my wife works at a busy supermarket, my main risk is from her.

The best thing we can do is keep our hands away from our face and frequently wash with soap.

[May7 in reply to gilders]

Oh dear, gilders you do have a very strong reason for staying on your immunosuppressive drugs.

A few years ago, I suffered a lot with a chest infection for several weeks, and the rheumatologist allowed me to take a few days off from my Mycophenolate, while still staying on a moderate dose of Prednisolone. No real ill effects from that as far as I remember.

Then at a review, my Mycophenolate dose was halved while still on Preds, to allow me to cope with any chest problems arising from my Bronchiectasis.

Apart from a vasculitis flare which didn't last too long, these doses have been okay, but then it was decided to wean me off the Preds altogether for the greater good, but this didn't turn out well.

If I get coronavirus symptoms, I think I will consult my Rheumatology department for advice. No way do I want to come off steroids though, after the severe dehydration I suffered last Christmas after my slow weaning off them. I hope to stay on my present low dose (5mg), and adjust things with the Mycophenolate as before.

However Coronavirus appears to be the greatest risk we've all had to face, so I've been extra worried about my risk factors, but keeping my fingers (washed!) crossed for the future.

[stuc in reply to gilders]

Hi gliders. Thanks for your response.

[541965]

Hi Stewart it's hard to say as we just do not know. I have CNS vasculitis which means I'm in a similar position. I'm considering a serious temporary life routine change. The facts are...the virus is very aggressive for which there is no vaccine & I have an already compromised immune system. I have to be more wary/precautionary than most.

[stuc in reply to 541965]

Thanks

I have asked my work if they can provide working from home option

[stuc in reply to 541965]

Thanks, hoping it goes as quickly as it came

[Jessileigh]

Stewart and all,

I am 46 and have had serious ongoing vasculitis for about 4 years. I am not working so I can generally stay home.

The people who are most dangerous to me are my husband, 2 teens and an 8 year old. We are insisting on good handwashing. I take a half hour when they leave in the morning and quickly wipe door handles, light switches, phones and remotes. We also have a foam in, foam out system that helps me feel protected. We have a hand sanitizer right inside the front door, and anyone coming in or out washes their hands before bringing new germs in.

If there is a way to have people wash as they come into your home, that would be my sage advice. If people have other simple ideas, please pass them on. Stay as safe as you can, and make the assumption that it is already in your community. But dont panic. We are the population that has had years of experience with personal adversity. We have coping skills. We know how to live through all this pain and fear. Hang in there everyone.

Jessi

[stuc in reply to Jessileigh]

Thanks Jessileigh