Keeping safe during COVID 19 - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Keeping safe during COVID 19

Vespa1 profile image

Wondering if anyone can help us understand how APS PATIENTS might be more at risk of COVID 19. I’m a teacher and being asked to care for key workers and vulnerable children but concerned naturally about bringing something home to Hubby who has APS and had 4 strokes. I want to do my bit but also want my husband at the end of this?

Should I myself also be self isolating?

Very worried and confused no advise from our own doctor who does not have a good understanding of APS so hoping someone can enlighten me.

Thank you

21 Replies
MaryF profile image

Hi, you may have to ring your GP in the morning for advice, it is very tricky this, and I understand your dilemma.

Mary F

dawnzy profile image
dawnzy in reply to MaryF

Mary I've rung my gp this morning and looked at the nhs 111 site not .uch luck there. I feel confused my boss heard the conversation over the phone with doctors reception and was shocked at staff attitude, I understand it's a worrying time and peoples stress levels are different, I wasnt expecting that. But can I ask how many have a a text or email to day

MaryF profile image
MaryFAdministrator in reply to dawnzy

I have not had one. There is very slow guidance coming through. MaryF

Vespa1 profile image
Vespa1 in reply to dawnzy

Nothing yet

HollyHeski profile image

Sadly your question is on all our minds, as the doctors just dont know?

I'm front line emergency response for the Red Cross and I've had to step down and self isolate, I gave APS & Sjogrens.

So feeling guilty as it's not in my nature to give in to things but by doing this I'm protecting all others in having to look after me.

So.... I can do my bit, I'm doing welfare checks by phone on behalf of the Red Cross.

So....... is there a compromise you can do? Can you teach over zoom etc for your students?

Can you semi isolate from your husband?

Talk to your colleagues about your concerns as well as trying your GP again. What ever you decide, there is no right or wrong. x

Vespa1 profile image
Vespa1 in reply to HollyHeski

Thank you for you time in reading and answering my post. I’ve decided to self isolate with my husband and email my decision.

Vespa1 profile image
Vespa1 in reply to HollyHeski

I’m collecting stuff today but little concerned about going in got to be done though.

There is no data on APS specifically and COVID19 - no one knows. More relevant, and with more known (or speculated), is probably what medications he is on for APS. Your GP may therefore not need to know much about APS - simply needs to check the prescriptions. Be warned they will be very very busy though.

The govt. is issuing guidelines for "vulnerable" and custom advice for "at risk", APS isn't mentioned for either but may well come under "chronic neurological conditions, such as..." - 4 strokes is definitely an ongoing condition. I have also heard that being on warfarin would include you - but can't recall where I read that.

I have had stroke, have APS, hypothyroid and hypertension, I am definitely vulnerable because I am on the flu jab list and not because of age. If your husband gets flu vaccine / reminders and is under 65, this applies.

I am not sure whether APS patients are "at risk", but many of us are on immunosuppresants which definitely _would_ fit with that category (I'm not). "At risk" are supposedly being individually notified with custom advice from tomorrow, I will wait and see if I get a letter. However, I am definitely officially "vulnerable", so we have already taken steps at home on that basis.

The guidance for vulnerable people is social distancing and isolating as much as possible, the guidance for households with a vulnerable person is much more vague. It says to move the vulnerable person out if the household has to isolate because of symptoms - but you are infectious for some days before symptoms so this seems inadequate, and it implies you should then do household isolation in the new accommodation. That last one is a big ask - I've not been able to secure any boltholes on that basis, apparently being locked in a house with me for 14 days is not a proposition my wife can sell to any of our friends :-)

I know that many households with vulnerable people are choosing to isolate now. I also know that that is particularly difficult if you have essential workers and vulnerable people together (my wife works public-facing, one son is on the front lines in the supermarket) - the government says nothing on this scenario.

I can't advise, but I can say what we've done:

- since tuesday I have been social distancing (the 2m dance) from family inside the house

- it's hard, unworkable really

- my wife felt she was at risk being asked to work with colleagues who have clear symptoms (cough and fever) but have been told to come into work, and the job requires close physical proximity ("coughing all over me")

- therefore from thursday I have been isolating within the house, living in the basement

- it is clear that that doesn't really work either, our house isn't big enough or setup for it, it would be unworkable for anything beyond short term

- it is also really hard emotionally

We now have a new plan, sort of accidentally:

- my wife, on friday night at the start of an on-call weekend shift, found that management had refused to implement any of the infection control measures she'd asked for, said it was business-as-usual and by the way they'd been so busy nothing had been cleaned all day, but there was no need it was all overblown and she was overreacting

- so she walked out

- one problem solved, we asked our son if he wanted to carry on working and move out, or stop and isolate with us, he said he would move out, felt it was his duty and that he didn't want to let his colleagues down

- he's moved out to one of our friends' spare room (he's an easier sell than me...) and we've waved him off to the front line (me from a distance), proud of him because he's stepped up despite that fact that he must be gutted because he planned to be travelling now for the rest of his gap-year having earned the money from his temporary job

- after a weeks quarantine / isolation period (if no symptoms...) the rest of us will be able to isolate together, a big big improvement

Whatever plan you implement to try to protect you and your loved ones, be prepared to change it, this is a fluid situation and your plans may be turned upside down tomorrow.

Vespa1 profile image
Vespa1 in reply to Ray46

Thank you for sharing your story and your advice it’s somewhat comforting to hear others are feeling the same with the same health issues. I was beginning to think I was missing something and that was making me paranoid. I’m going to be sending an email shortly stating my decision to isolate with my hubby. We don’t like you have bolt holes without putting others at risk and at least we know and can control things around us in our own home. Stay safe and bless you

Ray46 profile image
Ray46 in reply to Vespa1

If it helps, this morning my wife was offered being signed-off for 12 weeks on 80% salary, accepted obviously (money wasn't the issue, we have rainy-day money and it ain't going to get wetter than right now, but it's one less thing to worry about). I suspect the 80% ties in with the amount the government are saying they'll fund.

On a less good note, today she is definitely symptomatic, coughing (a lot) and temperature. It still might not be COVID, but our family reunion just got pushed a lot further back :-(. Since I've been isolated, pretty much, for 3 days now and they say 7 clear days is ok when on your own, I'll know in another 4 days or so whether I've either not been exposed or need to thank my immune system for not trying to kill me for once. Going to be a long few days.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Ray46

How is your wife now? I’m concerned...

Ray46 profile image
Ray46 in reply to KellyInTexas

Slightly improved on yesterday thanks Kelly, apparently fevers gone down and breathing more freely. But I only have limited information, I don't even get to look at her from the other end of the stairs now. Of course we don't know if it _is_ COVID, but she's had a textbook set of symptoms now, it seems very likely.

Vespa1 profile image
Vespa1 in reply to Vespa1

I’ve decided not to go into school due to the risk of bringing it home and Head Teacher said totally understood my decision and agreed. So 2 bits of good news from employers. Hope the cough proves not to be COVID 19 . Take care both.

I am self isolating because it is an autoimmune disease and I have 4 more! It’s up to you! As Holly says no right or wrong! I’m a born caregiver and trying so hard to listen and stay in! It’s so unlike me not to be out there! I tried to volunteer for NYC and they wouldn’t let me cause of autoimmune disease and heart too! I must make some masks or something to help! Maybe u cud do somyelse! Speak to your supervisors as Holly says! Godspeed

Vespa1 profile image
Vespa1 in reply to Debbweb01

That’s what kept going through my mind ‘it’s an autoimmune disease and surely that makes immune system compromised but no clear guidelines given. Thank you for sharing. Well done for thinking of a way to help stay positive it will help.

Hi all, I was only recently diagnosed and asked my Hematologist the same question.

In addition to what the others shared...

What I understood is that existing (!) blood clots in the body can increase the risks when getting COVID-19. But if you’re taking anticoagulants there is no increased risk with existing clots. So this only applies to existing clots!

A higher tendency to clot is not a risk factor as far as I understood, but of course there can be others. In that case, self-isolate and make sure you don’t get it. Anyway a good idea to self-isolate now to not expose risk groups.

Here’s the study I found:

Please don’t be alarmed. This is a good read to put things in perspective:

christylee profile image
christylee in reply to Annie5678

I had wondered if this infection was enough to set off CAPS,

I'm APS & asthmatic and 2xTIA but on front line as a practice pharmacist. Luckily have my own office but others do gate crash it on my days off.

I'm isolating at home on days off now . Driving to work, parking in work garage, 2m apart interactions with colleagues and cleaning surfaces and hands as often as needed.

Not seeing patients face to face now. So hoping this will allow me to work and keep well.

Not easy to work from home but will trial it this week.

There is no information regarding APS and Covid. However those of you on Hydroxy chloroquine may have some protection as it is one of the medications being trialled to treat covid 19, with promising results in a small number of patients.

Best to isolate if you can.

Thought this might be useful - some notes from Royal College Edinburgh online update which I found really helpful, obviously still lots of questions though:

•Patients infectious 12h before the onset of symptoms

•Time from exposure to onset of symptoms is 5-6 days

•Time from symptom onset to recovery is 2-6 weeks

•No longer infectious after 7 days

•Very low number of asymptomatic cases <1%

Fever and continuous cough are most common symptoms

Risk factors: age, multi-morbidity, immunosuppression, pregnancy is uncertain but treated as such until further data obtained

Risk factors for disease severity: Hypertension and cardiovascular disease

Imperial college study showed that the best predicted intervention =case isolation, home quarantine and social distancing

Hope this helps some of you

Vespa1 profile image
Vespa1 in reply to Yissica

Thank you for some useful advice and information.

Most nteresting post be well,

As Ray said I think it has more to do with the medications one takes as opposed to the diagnosis one has.

An autoimmune condition is basically due to ‘an overactive immune system’. That should mean we are no more at risk than others.

To calm and subdue our overactive immune systems we are often prescribed immunosuppressant drugs. These make our immune systems work at a lower level and therefore we are more susceptible to any infections including COVID-19

So if your husband takes immunosuppressant drugs such as Methotrexate and Azathioprine, he needs to shield - isolate.

Im in that situation. My husband is a Keyworker and so we stay 6’ apart. Eat in the lounge apart instead of at the table close to each other. He has moved into the spare room and we are very careful (no kisses!) (When he gets home: - All outdoor shoes and coats are left in the porch, phones, keys, bags cleaned with antibacterial gel and hands washed regularly. )

I’d be interested to see what your GP says. But if you don’t think it’s enough, make your own plan. Keep well 💋

I think if you feel it is safer to isolate then you cannot be sacked but I’m not sure what happens with your pay?

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