I cannot find out if I am on this so-called ‘vulnerable’ list however on the RA website they list All CTD sufferers, Scleroderma and Sjogren’s (yes, three separate rows!!) as high-very high risk of fatality if Covid-19 is contracted!!! Surely we must be on this list? And if not, then why not?
Who is on this Govt list then? - Scleroderma & Ray...
Who is on this Govt list then?
Written by
PattyFootpast
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They are writing to everyone who is on the list, so you will know if you are on it soon.
Health care professionals are working incredibly hard in circumstances never experienced before, they are also suffering uncertainty and have unanswered questions of their own.
I have still not received text or letter..I score 5 on the guidelines they set out so should definatley be on the list and my consultant has phoned me to cancel.all.my appointments and bloods as too much a risk. I phoned my gp and was told it's nothing to do with them and go onto nhs inform website. I am in scotland so cannot register like you can in england. Does anyone have any idea how I can be added to sheilding list and receive a letter which I will need to work. Thanks
A neighbour of mine has only just received high risk but as we all know she should have been given a note before now as she suffers with many lung problems,it is extremely frustrating, I am in the Same situation as you and know that I am one of many who have slipped through the net. I'm not sure where to check or who to get in touch with as my difficulties are a cluster of ailments which I know could cause problems if I get the covid-19 . Hope you find some answers soon. Take care and stay safe 🙏
i received a text yesterday telling me i was on the list
I took the decision to self isolate on Saturday, I discussed this with my work colleagues and they are very understanding. If you are worried make the decision yourself. If you are anything like me, your body will be reacting with all the stress of it all.
Please take care, stay safe
PS: Read Lucyjean’s post from Saturday, replying to missy moo.
We are a community, let’s support each other.
Hi, my friend sent me this, it might help. I have had a text but he hasn’t as yet. rheumatology.org.uk/Portals...
After following your link I found this.
england.nhs.uk/coronavirus/...
It’s all very confusing isn’t it? I saw this doc on Sunday and both my friend and I thought we would be ‘vulnerable’. He hasn’t had a text yet but according to the link I posted he isn’t classed as vulnerable as he takes only 1 biologic med for his condition!
According to the RA site anyone with a CTD (which includes us with LcSSc) is at high/very high risk ?
Worryingly though only one, now part-time doctor at my practise seems to understand my illness - the others just give me very blank looks so if the list is dependant on GPs informing Govt then we might have to start shouting ?
Same here. I take hydroycarbomide chemo tablets for essential thrombocythemia a form of bone marrow cancer. My surgery hasn't a clue not has the Macmillan nurse at the hospital I have asked her to check with a consutant today so will see what reply I get. I also have scleroderma but I see a consultant at a different hospital for that so no joined up thinking
Like I said previously; I’ve made the decision myself. I have both children in with me, only going in garden and my husband is in the process of arranging to work from home. We are taking no chances. I don’t want to be a statistic.
Please take care, stay safe.
I received a text yesterday. From what you say about your condition, it very much seems that you should have had one to. These texts and letters from NHS are being sent out to people who have been identified by their GP's ,Consultants as vulnerable/high risk to this virus. I think your first port of call should be to one of those professionals. Personally I think you should stay at home for your own protection. I hope you get this sorted, take care.
I received a text message yesterday to say I was High risk and to stay at home for 12 weeks
Hi Glynis - May I ask if you know what put you on the list please?
I have Sclorederma with lung involvement.
I guess they are working through all the varying conditions in turn. Messages/letters are being sent up to 29th March I believe.
I have scleroderma with lung disease and received a text yesterday to say I was high risk and not to go out for 12 weeks. I guess some who haven’t received one will in due course. Take care off yourselves x
I have Raynauds and limited Scleroderma. Am taking mycophenylate and a blood thinner. Had a text yesterday saying stay at home, so I am sure you will receive yours. Not sure if they are doing it via your GP.
Haha if it’s via my GP I have no chance .... only one of them knows what scleroderma actually is so good job I chose self-iso a week ago !!!!!
Stay safe x
Same here, been isolating for a week already too. Some of us have sense, can't believe other people's behaviour in and out of the shops. I realise how lucky I am with my GP practise here in West Sussex, when I hear stories of other peoples. Take care.
💝 stay safe !!!
Hi - I have Sjögren’s and CREST and wonder if it’s because both these CTDs have a significant impact on the respiratory tract due to dryness and hardening of oesophageal tract? I know this because I’m constantly dry coughing, breathless (sounds very like asthma) and have silent reflux - plus simmering sinus infections. I can say that this is definitely specific to my Sjögren’s and overlap CTD.
So perhaps it’s not that Lupus and RA and other rheumatic autoimmune diseases are not putting people at greater risk of themselves but just that people with CTDs which directly impact on respiratory function as both of these do - are most likely to cause the most severe form of Covid19. Just making a guess based on my own experience. I’m in Scotland and have had no text or letter but have just been given Mycophenolate to start later today and they know I’m self isolating already.
The rheumatologist who phoned me last week explained that all others have been redeployed and she thought from my dry cough and breathlessness that I might have CV. I don’t think so because I’ve had same thing for two years getting steadily worse.
PattyFootpast in reply to
Hi
I have LcSSc and Sjogren's with the problem of GERD as well due to both of the AI diseases! I am also often breathless but they cannot find out why (it was misdiagnosed as ILD last August but now my Respiratory Consultant says I 'have no more fibrosis in my lungs than anyone who has previously had pneumonia') - I know I should be on the vulnerable list but I don't appear to be?
Every time I see any doctor at my practise, apart from just one, look at me so blankly when I say systemic sclerosis/scleroderma I know they haven't a clue? It is really scary?
in reply to PattyFootpast
We sound in similar boat. Maybe the Sjögren’s is the culprit as I think my intermittent cough and breathlessness are mix of reflux and sinus from severe nasal dryness perhaps. Nothing showed up in my chest X-ray or lung function tests but stuck waiting for echo to exclude pulmonary hypertension -which I believe can cause breathlessness. I know my GPs haven’t a clue about either disease and my new rheumatologist has been redeployed so yes it’s scary. But all we can do is stay home, sit tight and hope that by doing so we don’t get this terrible virus. 🤞🏻🤞🏻🤞🏻🤗
Hello to you all.I'm a 62 year old male from Northern Italy.My part of the country has been hit hard by the corona virus epidemic.Many of those who have died had been previously suffering from a series of health issues , mostly regarding lungs and heart. My doctor told me that I can continue to go to work precisely because I don't have any respiratory or cardiac problems If I had them she would have told me to stay home.Apart from that I don't take any immunosuppressant drugs.If I were taking any, again she would have told me not to go to work.Fortunately I have a benign form of scleroderma and the only drug I take is adalat for secondary Raynaud's.However my doctor told me to wear a medical mask and keep people at a distance.Keep well all of you.
Hi! Stay in stay safe !!!! That is becoming a bit of a mantra in U.K. ? Really though we know it is just terrible for you in Italy so take care yes? x
You are right when you say stay in stay safe.I am convinced that it is best to have a total lockdown but the vital parts of an economy must be in motion.I work in the food industry and that just can't stop.All the best.
I find it genuinely worrying ! O well I’m well into week 2 of self-iso .... catching up with all the tv I never normally get to watch 😂
Take care and stay safe!!!
I have a limited scleroderma diagnosis and on mycophenolate but haven’t received a letter. I have spoken to my GP and he told me that being on immunosuppressant meds is a ‘grey area’ and once there is clarity, he will get back to me. Until that point, I must not go out at all and be shielded by family members. I was loathed to bother my GP and did it via an email via their website. At least I got something in writing that I could give my employer in the interim. I work for the NHS so expected to be at work as a key worker so not knowing was really worrying.
That’s what it looks like according to the rheumatology stuff I have read. I think I should be a social distance person too. I would have thought your lung capacity would put you in the shielded though. I think if you go on the NHS England website, you can challenge the decision but not 100% about that - you read so much at the minute and lose track of what’s what. Take care.
I would have thought so too - very worrying.
Yes received s txt yesterday and letter to follow
Same here ... however I also got a text from Sainsbury’s which said I was now ‘vulnerable’ but when I went on their website I wasn’t... very confusing 🥰
i hadnt recieved a letter so i cobtacted mny GP. He said tbere had been a big mix up centrally with peoole who shoulnt have the letters getting them and others who should have them being missed.
As well as having scleroderma i also have bone marrow cancer which is on the list for shielding
The letter finally arrived yesterday. It was sent from the royal free where i go once a year for scleroderma in between bei g seen by a consuktant at my local hospital.
i was surprised by this as i was expecting the letter to come from the cancer hospital from who i have heard nothing
So a further update. As I said previously I finally received a letter from my respiratory consultant stating that I should not go out for 12 weeks as I was at severe risk from covid 19. He followed this up with a phone call and confirmed I should not go out. I then had a further letter from the Royal free stating the same as above and another letter came from the NHS stating the above as well. I have also had several texts from the NHS telling me not to go out. However unbelievably a letter from my GP came today stating that they have identifyed me as moderate risk and it says I can go out as long as I stay 2 metres from others. This beggars belief. Luckily I know I should not be going out at all and I know I am in the high risk category but some people might have taken the GPs lette to mean it is now okay to go outside and put themselves in danger. Where has all the joining up gone!!
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