Coronavirus

[NSV69]

Hi

I have interstitial lung disease as per scleroderma.

Naturally worried about the rapid spread of Coronavirus with most deaths being caused by other underlying health conditions.

Apart from taking the usual precautions and just applying common sense I am still worried about the implications if I were to contract this. I presume I would be hospitalised but at the same time the damage from the virus is irreversible so what would be the chances of being cured?

I am 50 and work full time.

Should I be overly concerned? Does anyone have any words of reassurance is it all doom and gloom and currently being portrayed in the media?

Thank you

[Hidden]

Obviously most of us with autoimmune diseases will worry more than healthier members of the population. I think it’s because Covid19 is new and no-one yet has natural resistance to it that we worry more.

So I think the only advice we can follow is the washing hands more often, maybe using a throw away glove when opening door handles, flushing toilets in public/ work place, keeping your distance more, no hand shaking, trying not to touch your face and avoiding crowded places if you possibly can. All the stuff that the doctors are advising on the media I guess.

So worrying is entirely understandable under the circumstances. I seem to be getting myself into an out of character stew about it. But rationally I know it won’t stop us catching coronavirus - where applying as much common sense and making sure you have enough basic provisions at home if you do need to self quarantine - is probably a good idea.,

[NSV69 in reply to Hidden]

Hi Twiithytoes

Thank you for the response both supportive and reassuring. Appreciate your time.

[Hidden in reply to NSV69]

This might reassure about yourself somewhat - unless you’re a man.

bbc.co.uk/news/health-51774777

[NSV69 in reply to Hidden]

Hello

I see what you mean unless you’re a man!

Although a lot based on assumptions and early indications - will just have to wait and see what happens nationally

[Hidden in reply to NSV69]

Yes and bearing in mind that these possibilities might well be influenced by the numbers of male smokers v female in China etc. But still I have read that, just as there’s a gender correlation with prevalence of autoimmunity, there maybe a protective element to this as well.

Just before Christmas my husband had a really nasty cold with fever which then turned into a dry cough which lingered and baffled him because he has never had a cough before believe it or not! I work with him as well as living with him yet I never caught it off him.

I think sometimes my immune system is totally firing off at everything and anything but at other times it slumps regardless of whether I’m on immunesuppression or not - and I get everything going - and really badly at that.

But I do have something called Hypergammaglobulemia as part of my package so perhaps this makes me a bit different. I feel presently that my immune system is way out of control and no Covid 19 is going to stand a chance!

[NSV69 in reply to Hidden]

Hiya

Yes all very hit and miss

[hhardwick in reply to Hidden]

I totally agree. I dont tend to get coughs and cold etc my autoimmune disease attacks the bad and the good. I would be interested to see how I would fare with covid 19. Not taking any risks but would be interesting x

[Mlw79]

I have the same disease and the same worries. I’m trying to rationalise and keep it in perspective, with a 4 year old boy to look after I have to remind myself that seasonal flu is truly deadly- it kills 500,000 people across the globe annually and I would never panic over that or change how I live my life. I am careful and control the things I can. I think the media have a lot to answer for, they are sensationalising every aspect and creating fear. Try to keep calm, you are doing the right things xxx

[NSV69 in reply to Mlw79]

Hi MLw

Thank you for responding.

You are absolutely right about the media and they are causing more panic.

Scientists are trying work on a cure but the media don’t appear to be interested to report on that.

[trunchalobesity]

Thank you for posting this.

I’m worried sick.

I’ve have scleroderma with lung disease and heart involvement.

I’m 51 years old and am on the maximum dose of mycophenolate and I’m on 7.5 prednisone , so I’m really immune suppressed.

I have 3 girls all at university of Birmingham, one a first year nursing student.

I don’t see how I can avoid this although I’m doing quite a bit of social isolating.

The trouble is I can get a chest infection from a common cold. Last year I cracked a rib after getting a bad chest infection.

I’d like some real advice.

I have a gastroenterologist appointment this week but I don’t want to travel in on the train and hospitals are breeding grounds for infection.

[NSV69 in reply to trunchalobesity]

Hi Trunchalobesity

You appear to be taking the common sense approach but are right in being in a dilemma about whether to travel to hospital. I have about 4 appointments over the next 2 months but very reluctant to go.

Although I have been advised that if it is a review appointment then this can be done over the phone so maybe ask the question. Some other good advise is to wear disposable gloves in the workplace where possible and normal gloves at all other times. I think the Gov will also recommend more people working from home in the coming weeks.

Take care

[linda-l]

I have ILD too and am due to go into hospital for Iloprost in two weeks, but feel it would be wise to postpone this visit

[NSV69 in reply to linda-l]

Hi Linda-1

Think you need to have a chat with the hospital about postponement.

I am also surprised that hospitals are not suggesting that general review appointments are not done over the telephone and/or video calls during the outbreak.

Out NHS is going to be critical in trying to contain this and really need to start thinking outside of the box

[linda-l in reply to NSV69]

Thank you. I will call the hospital this week but am surprised they have not contacted me, either to postpone or even reassure me.

I'm not sure if ILD is common with Secondary Raynaud's or if, in fact, they've checked their records to realise which patients are at risk.

It's my fifth time for Iloprost and last year I came out after treatment with an infection in both lungs, which developed into "real" flu.

I go to Hammersmith Hospital

[NSV69 in reply to linda-l]

Hi linda

I have heard some doctor surgeries and hospitals are contacting patients in advance but as per usual this is nit consistent across the board.