Chronic illness/immuno suppressed support thread?

[ALemonyPea]

I'm trying not to get too worried about Corona virus, bit hard when it's all over the place.

I have a chronic illness and taking chemo tablets, so my immune system isn't at its best at the minute.

I've got a head cold which started on Monday, no temperature. I've not been in contact with anyone known to have CV, or not been on holiday anywhere known to have an outbreak. No people in my city have been confirmed as having it. Trying not be silly about symptoms as it's nothing that I've not had before.

Anyone else flapping a little? Could do with some support, if only to mentally slap me.

I have asthma - but have been ok for a while.

And I was on leflunomide. I stopped it 9 months ago due dodgy blood test results. I had one biologic injection in October that lasted 2 weeks and for other reasons had no more. I was given a new one but no way am I starting it now. The leflunomide is probably just out of my system now - these drugs can hang round for months and I hope the one injection is also clear.
I've just had a nasty virus and had a mild chest infection - the healthy youngsters in my office were off for longer than me and one is still very unwell poor thing.
I am really hoping I might have a fighting chance against this virus. I know the pneumonia would be a massive challenge. I just hope I can beat it.

Yes I'm a bit concerned, have long term lung disease with complicated bacterial colonization a. Only just recovered from double pneumonia which I was in hospital for last month so feeling a bit vulnerable about it all. All I can do is keep washing hands and be careful I suppose. I work from home which helps.

Hello, marking my place. I have asthma (as does one of my children). I also had cancer so take daily medication and chronic low white blood cell count. My mother also has RA and takes cancer drugs and I have four elderly grandparents. I too am shitting it x

Checking in as a fellow immune suppressed individual. I’m on Anti TNF inhibitors for arthritis. I stopped than a couple of weeks ago as I had such a horrible cold/flu, but had to start again before I was better as I had such a bad flare.
We live rurally. Planning to hunker down and try not to be part of the 80% infected, for the next 6 months at least.

I'm immune suppressed and have asthma and other health issues too. We all came down with a bug that has taken a lot of shifting, sore throat, fatigue, temperature etc. I'm doing the best I can, washing hands and using hand sanitizer. I have to get the bus to work though and a girl was coughing over the whole bus. I can only do what I can do.

This article says immuno suppressed people may not be so worse off

www.statnews.com/2020/03/03/who-is-getting-sick-and-how-sick-a-breakdown-of-coronavirus-risk-by-demographic-factors/

I have lung disease and commute into London 3 days a week. Worried - yes. Everyone needs to wash hands or sanitise.

Neutropenic here and yes, concerned

I have a life limiting condition but am more concerned with DC, all have asthma but DD also has CHD. I'm terrified of it coming our way.

Here are the relevant sections from the article.

As for the mothers, “Covid-19 seems not to be especially severe in pregnant women, at least based on the small number in this study,” the scientists wrote. That was somewhat surprising because pregnancy suppresses the immune system (so it doesn’t attack the fetus); pregnant women are more susceptible to respiratory pathogens than non-pregnant women. Nevertheless, none of the nine women developed severe Covid-19 pneumonia.

It may be that immuno-suppression is actually helpful. Some of the most serious symptoms of Covid-19 result from an immune system on the rampage rather than a lethargic one, Chinese scientists found: An extreme immune response called cytokine storm, a flood of immune cells and the biochemicals they produce, tears through lung tissue.

--

Also learned that risk of intensive care or ventilator is 3.5x greater for those with pre-existing conditions. And risk of death is 6% as opposed to 0.5% (no health condition).

Only a small study. I think anyone with a cold should be allowed to work from home.

My conditions are ones where my body overreacts. So it kills off my neutrophils thinks I need to implode with hives if I get hot and gives me abscesses for no good reason. I often have conversations with it where I point out its giving itself twice as much work to do

I wish I had the option to work from home, I'd definitely be doing that.

I'm mid 30s with a couple of auto immune diseases. I also have breathing problems but apparently this is just a breathing disorder. I am worried! I've been on immunosuppressants since summer 2018, in winter last year I caught a cold that was unlike anything I've ever experienced & went on for over a month - I had 4 weeks off work with it so I'm sure this virus would be the end of me! It's confirmed in my city too.

I'm sick of hearing that it's just a bad flu or only a problem for the elderly. How many people have autoimmune problems, asthma, cancer etc etc? The govt said they want to focus on protecting the most vulnerable but they don't seem to be doing much to do that.

Luckily I stocked up on hand sanitiser before all this & I also have a TON of those clinell wipes but when you have lowered immunity you are dependent on everyone else around you too - no one at my work who knows my situation takes it seriously at all because I don't look ill. After that insane cold last year I started taking Vitabiotics Immunace Extra Protection & I've been taking Turmeric for a few years now so hopefully that's something.

That's it though isn't it Lux, if you don't look ill, people don't take your illness seriously.

Not many of my friends know I'm taking chemo tablets, I put a post on FB today asking people to keep an eye out for anti bac gel and to pick me some up if they see it. Loads of people mocking me about panicking about covid19, even got a few messages telling me to get a grip (deleted the "friends" after that). I've used anti bac since starting the tablets as I don't want to pick anything up if I can avoid, it's not a new thing me having anti bac when I go out.

@CrunchyCarrot there’s no greater risk to people with hashimotos. Hashimotos is an autoimmune disease, but the reason people with (other) autoimmune diseases are at greater risk is because very often their treatment is immune-suppressant medication, like steroids. I assume you’re being treated with thyroxine and that’s it. So don’t worry!

I’ve got hashimotos AND am separately on prednisolone in pregnancy, so am a bit worried about that. Hoping that as I’m young and otherwise healthy I’d still be ok if I got it.

I have lupus and am on immune-suppressants, I also have some lung involvement. I've tried really hard to be strong about corona and I am still trying. I'm washing my hands/sanitising and avoiding crowds/busy places when I can at the moment, with plans to step this up in the coming weeks. What else can I do? But today I just feel broken, sat crying outside the library at my uni because I need to get books but I'm scared to go in. This will likely kill me if I catch it and it isn't fair. Sorry for the self-indulgent post.

Joining you all here, sorry to hear there are so many of us in the same shitty boat. I’ve just spent 4 days on the sofa with a normal cold, and can hardly get myself up the stairs to bed. What would pneumonia do to me?
My specialist team sent out a useful email on what do about Coronavirus, basically don’t get it! So that’s a fucking relief. My kids are both going to germ fest local comp every day, husband commuting by train to London, I’m basically powerless to protect myself and feeling so worried about this. Love to all of you in the same boat, don’t care if it’s un-Mumsnet of me.

just to add, i also have (diagnosed) OCD, so my hands are predictably red-raw from washing and my psoriasis is not happy. what larks!

I have chronic severe lung disease which no one (except my medical team) take seriously because I don’t look ill and can still (for the moment) exercise.
I work in London and also commute round the south-east. I already wore face-masks and washed my hands a lot prior to covid19 as even a cold can make me seriously ill.
I am finding this terrifying. I have cancelled all gym classes and social engagements and am considering giving up work (not the sort of job I can do from home).
I’m taking extra zinc, turmeric and echinacea to help boost my immune system.
Thanks for starting the thread.

I'm on Humira and regular steroid injections. And I work in a school - being the person who amongst a million other things deals with every single sick child and member of staff. Including the ones who are obviously sick, have had contact with people who have travelled to certain countries, but fall through the ridiculously large holes in the NHS 111 net.

Work don't think this is a problem and I need to pay the bills, anyhow.

I'm getting the feeling I might have been unknowingly appointed as the school canary in the mine.

Because my immune system hates me along with the rest of the world so much, I rarely get sick, I just have constant, unrelenting pain and problems with mobility. So if they're waiting for me to keel over, they might have a long wait, especially as I rarely do anything without a fresh pair of gloves and copious, NHS trained, handwashing.

My hands are fucked, by the way. They feel practically sunburned with that tight, dry feeling of leather, as a result of their soap supplies. There's no handcream in existence (and with Psoriasis, we have an extensive collection of such things) that is able to keep up.

Just got to wait and see (and hope, I suppose).

Urgh @MitziK I assume you've tried Bodyshop Hemp at least it's quite thick which seems to help.

I am so glad DH works from home, he has been in much better health since he stopped working in the office that had air circulation!!!

but the reason people with (other) autoimmune diseases are at greater risk is because very often their treatment is immune-suppressant medication, like steroids

@HarrietM87 Type 1 diabetes is autoimmune and insulin does not suppress the immune system. We are a high risk group because of the diabetes itself.

Yeah @Absentmindedwoman diabetes is different. I was quite obviously trying to reassure a poster who has hashimotos (not diabetes) though, and what I said re hashimotos is correct.

Hello all. I’m also on immunosuppressant medication. Went to see consultant yesterday and we’ve decreased it slightly to give me a bit more of a fighting chance. Obviously I work in schools, which is perfect 👍
If your hands are sore could I recommend O’Keefes working hands cream in the green tub? Brilliant stuff.

I have stage four cancer, am on drugs which reduce my immunity.

Developed a sudden fever and chest infection and cough with no other symptoms (eg sore throat or blocked up nose) two weeks ago. Felt awful and didn't leave the house once for FIVE days. Just about got better from that after ten days.

The night of the tenth day I got a sore throat, stuffed nose. Morning of day 11 I woke with a temperature and racing heartbeat. Chemo hotline nurse said to go into oncology ward for blood tests.

Arrived and put straight into a side room but nurses not wearing any protection. Asked if I had travelled. I said no, nowhere. But by this time people were catching it from other travelllers.

They agreed I had a temperature and fast heart beat and they did blood tests.

They did a swab of my throat which they said was for flu and other viruses.

Blood tests came back as really low for CRP infection levels so I was diagnosed with a virus and sent home. Told that I would be contacted if the throat swab came back with anything.

Spent the next three days with a temperature, blocked nose, horrid dry cough, and feeling horrid. Recovered by yesterday, no longer coughing.

Oncologist asked me to go in and see him today before today's chemo.
We discussed the viral symptoms. He looked at the throat swab and told me that actually I had not been tested for the covid 19 Coronavirus, just other normal flu viruses.

He said that it sounded like it could have been Coronavirus, but that it equally could have been another virus. But that now I am better there is no way of knowing.

But surely by Saturday if they were doing throat Swabs on me, the NHS should have the provision available to test immuno compressed patients for corona virus when they were having their throats swabbed anyway? Just add the extra test? Apparently not.

And certainly no advice was given to me to avoid people or to stay at home. Just to look after myself.

So I guess that if I get it, then the last two weeks have not been Coronavirus. And if I don't, then it was.

Thinking of you all, it's really hard. I'm trying to think of what I can do...I have been to the supermarket tonight and begun to stock up on food (never in a million years did I think I would do this). My partner is a chef and is scheduled two weeks holiday beginning in ten days. I am a postgrad student so am thinking we will, while not totally isolate ourselves, minimise going out as much as possible for those two weeks. It just seems the sensible thing to do? Would you guys do the same in this situation?