Confusing Covid 19 advice: Hi all.I... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Confusing Covid 19 advice

Mylomydog profile image
6 Replies

Hi all.I live in dundee in scotland,i have limited cutaneous scleroderma ,i don't have heart or lung involvement and do not need to take immunosuppressants,I have the usual symptoms of difficulty swallowing,silent reflux,raynauds and persistent sinus infection symptoms and a chesty cough,i haven't been told to shield but according to public health england people with scleroderma are told to shield but i don't know if this applies to people who don't take immunosuppressants,i spoke to a doctor who said i would have had a letter if i was on the at risk list which i haven't but the doctor also said some people were getting letters that don't need to be on the shielded list and the ones that should be on the list haven't been sent a letter so i have no idea what to think.

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Mylomydog
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Sclero profile image
Sclero

Hello Mylomydog.

I have much the same symptoms as you. I received a letter from the Royal Free advising to remain in full lockdown for 3 months. The problem is, I suppose, that the immune system is compromised, so leads to infection, especially the Covid 19.

That is the simplest answer I can give. I hope this helps.

Sclero

LucyJean profile image
LucyJean

Hi there, I don't know if you have seen it but here is the advice on the SRUK website. it breaks down all the risk factors and allocates a points system to help you identify if you are at risk or not.

Hope that helps

Lucy xxx

LucyJean profile image
LucyJean

Oh, I forgot, here is the direct link:

sruk.co.uk/about-us/news/no...

Lxxx

Mylomydog profile image
Mylomydog in reply to LucyJean

Hi.thanks for the reply.i think its best to shield even if not on immunosuppresants.stay safe everyone.

Lyndabickley profile image
Lyndabickley

I diffuse scleroderma with all the consequences including lung fibrosis but am also over 70. I received a letter to shield from The Royal Free followed by a letter from the NHS. I have taken mycophenalate in the past but not currently. According to the scleroderma flow chart only those on certain drugs should shield! I am happy to shield as I do not want to take any undue risks

Midgebite21 profile image
Midgebite21

Hi, I’m Edinburgh and same as you health wise with regards SSc, I haven’t had any letter either. Scotland seems very patchy with regards notifying patients.

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