Limited cutaneous systemic sclerosis, secondary Raynauds and IEM versus COVID-19

[-missymoo]

Hello

Reading confusing reports about this, should we who have this be self isolating? I have no lung involvement and don’t take immune-suppressant drugs.

Thank you x

[Elle-St-Joan]

Hi

(Same condition)

I can’t find any clear guidance, I’ve been I contact with my named consultant and I am waiting for advice. I have only just had all my annual checks and I’m still waiting for my PFT results. As soon as I hear anything I will share.

[-missymoo in reply to Elle-St-Joan]

Thank you!

It’s all very conflicting. I’m due my annual lung function on 08/04 to check all is well there.

[thepictrofdoryingrey in reply to Elle-St-Joan]

Not sure how to 'follow' notifications on this thread, but I am also interested in the response.

[Agedbiker]

I do have lung involvement and have been told to isolate for 12 weeks by my specialist. One trip to hospital next week for chemo and then that's it. I have been isolating since last week on rheumy's advice. Everyone will be different so speak to your specialists. If you are immuno suppresses or have lung involvement then I would personally err on the side of caution. Take care all.

[Itsanuisance in reply to Agedbiker]

Same here, I take immunosuppressants and a few other drugs. Signed off for two weeks and we are ‘ the more vulnerable’ as we already have an autoimmune problem. This means 12?weeks home working if possible.

[trunchalobesity in reply to Agedbiker]

Same here. My consultant said 16 weeks isolating.

[LucyJean]

Hi there, I would speak to your Consultant about how vulnerable they think you are. They are after all the ones (apart from you) who know what health issues you experience.

As mentioned in the other replies there are a number of factors that make you vulnerable.

Age...this is a major contributing factor, going on the data from other countries (regardless of health). If you are elderly then you should self isolate. If you have any heart/lung/kidney issues, diabetes, or are on any form of steroids/immunosuppression then you need to self isolate. Bear in mind that any major attack on your body by a virus is going to fire up your immune system and if you have scleroderma this will also mean that your immune system will also attack you and you are likely to have a flare of your condition which could have some unwanted consequences, or it will take you a long while to get back on your feet.

The whole of the government response is aimed at keeping people out of hospital. The NHS is running on the edge most of the time, and it does not have the capacity to deal with lots of people becoming seriously ill with Coronavirus. Those patients will develop severe respiratory issues (as well as heart and kidney issues) and will need the precious few ITU beds that are available, or at least intensive support within the hospital...in isolation. We do not have the staff or facilities to deal with a major influx. All the hospitals are having to develop plans to try and cope with this. The more people self isolate and follow government guidance the better for everyone, and the quicker this will be over. If people continue to take risks or hope they will be ok then we will have a major issue. Don't put yourself and others at risk and end up one of the statistics that are broadcast daily.

Stay away from other people. Stay safe. Stay well.

Lucy xx

[NSV69 in reply to LucyJean]

Totally agree with everything you have said. I too have lung fibrosis and have been advised to isolate for 12-16 weeks

[svanseghe57]

I am in your same situation.Have been suffering from scleroderma in a very mild form for over 8 years and my doctor has told me that there is no need for self- isolation.However what Lucy jean has written must be taken into close consideration.

[KatieAnna]

Hi I'm in the same mild category as svanseghe 57,but have read this long but very interesting article about self isolating for everybody. It's a slog to read it, but I recommend it to anyone who is wondering about what to do.

medium.com/@tomaspueyo/coro...

[Elle-St-Joan]

Hi,

Hope this finds you well. I haven’t heard anything as of yet but have decided to self isolate. I work in a school and the risks have just increased. My work colleagues have been really supportive of my decision. After reading Lucy’s post I realised that I have no control over the virus but can still protect myself. Both my children are staying in with me and my husband is currently organising working from home.

Take care, stay safe.

Xx

[kimmo]

Hi missy-moo. Can I ask if you’ve had any internal organ involvement to get your diagnosis of limited cutaneous systemic sclerosis? I lost my colon and large intestine and that’s when my consultant changed it from just scleroderma. I’m on immunosuppressants and have been since 2010. So many people use this term, I’m not sure what the definition actually means anymore! I’ve self isolated for over a week now and suggest you do too.

[Linnet2]

I have received a letter and a text frm NHS telling me to stay in for twelve weeks as I am classed as extremely vulnerable. ( I have lung involvement and take immunosuppressents). I also received a further letter from my respiratory consultant and one from the Royal Free saying the same thing- not to go out for 12 weeks as I'm extremely vulnerable. So I registered on the government website as advised only to get an email from them asking me why I have registered. Unbelievable!!

[PattyFootpast]

Hi

I have limited Systemic Sclerosis, complex CTD, Sjogren’s, 2ndy Raynaud’s, hypothyroidism.

Connective tissue disease is no 1 on the RA website as high-very high risk of fatality from Covid. Systemic sclerosis is separately listed at no 3.

Lung involvement is not an issue.

Our immune system is in overdrive and basically attacking our organs because it ‘thinks’ they are somehow wrong and shouldn’t be there.

As I understand it, Covid makes the human immune system react wildly and forces it into overdrive.

Combine our problem with Covid and we basically get a ‘double whammy’ , which is why we are more likely to die.

Talk to your GPs- most haven’t a clue about autoimmune diseases (because that is not their speciality!! - you wouldn’t take a sick plant to an auto mechanic would you??) and MAKE them understand, go to the RA website and print off the chart, ring your consultant’s secretary and ask for a phone chat!!

We have one life and it’s bitten us with this horrible disease and goes on to add more usually but please KEEP YOURSELF SAFE so you can enjoy whatever you can.

You must be your own defender/protector so do it and fight.

‘You got this’ as the Americans say!!

Hugs

PatH