Yesterday I received a letter from my local NHS Board, Scotland, informing me that I have been coded as having a condition (LUPUS) that could lead to immunosuppression.
Lupus was not included as an at risk condition at the start of the pandemic, so 18 months on, I deemed to be at risk. I did not shield, I have had both of my jabs. Now at the age of 72 if I have family aged 12 to 16 years living with me or I am in close contact with I have to encourage them to have their jabs.
A case of bolting the door after the horse has bolted I think.
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Babsy2
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I read this and initially replied just fuming but have now tried to better articulate my feelings. I do feel really disappointed with the British Society for Rheumatology. I feel it's their job to coordinate a response for rheumatology patients in times of emergency and to advise rheumatologists across the country on what to do and the government on what to advise for these patients, particularly as they are an administrative body not a frontline service. I feel they let us all down (patients and rheumatologists) in the midst of a pandemic and left vulnerable lupies confused, at the mercy of a patchwork response across the country and having to share information via this forum so we could advocate for ourselves to get the help and protection we needed and the letters we needed to stay safe at work. Literally I remember watching on here as we were all told different things by our clinicians and then had to work it out for ourselves. And then to have these letters sent out 18 months after the fact just feels like a slap in the face. The weeks of difficulty I went through trying to get an answer from the crappy local rheumy on this. In the end my GP took it upon herself and wrote a letter to my employer. But it shouldn't be like this. It really shouldn't. Sigh. We deserved better and frankly rheumatologists deserved better from their professional association.
I think they are saying you’re only in the at risk group if you’re immunesuppressed not because you have Lupus. Having Lupus of itself is no riskier than having sjogrens, Vasculitis, Scleroderma. RA etc or overlap syndromes or possibly no underlying conditions. But it may mean you are given immunesuppression or steroids which do put you at increased risk of the vaccine being less effective.
They aren’t interested in recategorising Lupus. They just got hold of all our names from central NHS Scotland flu vaccine list data so people living with householders with any of these conditions could be offered vaccines as priority. This applies now to young householders who may live with us and whom they have now decided should have the vaccine.
In my case, if it’s same letter, it came the other day in a blue envelope. I got excited because I thought it represented a booster date but instead it said broadly same as yours. Only in my case it said because I might be (immunosuppressed) which I am.
The really annoying part of this coding was that it’s taken so long to work out. The left arm has no idea what right is doing.
So when my second vaccine was due I phoned the GP practice who gave me first one as a shielder, to say could I book a slot please as had seen it on their website. They said no it’s only the over 70s and we won’t be doing the shielding group this time as no funding. Gave me a central vaccine number which I phoned and was told that because I’d chosen to go to GP practice when they offered (2 weeks sooner) I’d come off the central system?! The second one had to be done by same person/ organisation as did the first just as I thought.
So I phoned GP receptionist back and she was a bit horrified because realised this would apply to lots of patients, spoke to her manager and lo I was offered second vaccine slot. Now I’ve relocated GPs not sure where I’ll get my booster. But that took up a whole morning on phone I’ll never get back!
Re shielding: the way I see it is that it was done disingenuously by only the UK. Firstly they tried coding by medications only but missed lots of us who had only just started the meds or who slipped through the net. But also the gist of it as a concept was flawed just as the clap for the NHS was flawed. Everything was a political rallying “coming together” gesture to show the world that the government was proud to be saving NHS beds for Covid patients - including shielding us.
For me personally it was useful at first but hells bells I had to go down some weird route to get it as I only started Mycophenolate a week into the first lockdown. I needed it not just for priority shopping but the help my frontline key worker husband get furlough.
I think really it was only useful for this purpose and older people who had already taken retirement or those who didn’t go to work due to age or ill health or who weren’t living with others who had to didn’t need to be in the shielding group. We were set apart and it caused alarm and resentment and pitted patient groups against others and neighbours fell out as shielders were resented as mollycoddled but those who had to go to work despite being diabetic or asthmatic or just because people started to think that it was shielder’s fault that the rest of the working population couldn’t re-open their businesses or go out and party.
Basically they texted me a lot with texts about shopping then telling me what I could and couldn’t do as someone clinically extremely vulnerable. I started to hate and resent those Scot.gov texts I can tell you. Rather than feeling reassured that the world was looking after little CEV ol’ me I felt that I was being told to lock myself away to help the rest of the world risk get Covid and save the NHS for those who did. No one thanked us. No one clapped us. I started to get paranoid beyond what was realistic or normal or remotely in character.
I was having infusions in late December as an inpatient and showed one of the nurses as the latest text came through telling me that Covid rates were too high and as a CEV person I must continue to shield blah blah. The nurse was intrigued and asked to see it. She was startled and said a) you have more info than we are given about the R rates locally and b) that must be so hard on your mental health? No one said it but there was a hovering threat of DNR for this group if push came to shove as it had in Italy.
So I don’t actually think anyone who didn’t need it for their or their family’s employment status reasons - should have been shielded in this way. Everyone who didn’t have to go to work should have shielded as a matter of course within the confines of our mental and physical wellbeing. I think shielding has been divisive and, for those living alone, must have felt more like a punishment for being sick, a kind of hell, rather than because governments and the NHS actually cared about and wanted to look after us. X
Lupus does not lead to immune suppression certain lupus treatments do. Are you on immune suppressant treatments? If not this letter does not include you specifically if so talk to you treating doctor and ask about your risks.
Sadly Roarah a lot of us did this at the time and got completely mixed messages from different clinicians and sometimes even the same clinician changing their minds. Was total chaos. Didn't have to be.
The uk I believe is the only system doing a system of ranking risks. I find it all very odd to be truthful. Especially since most studies show that lupus and RA carry the same risk as the general public. The uk seemed to pick their risk groups on early hunches not data. nyulangone.org/news/studies...
When I had my jab and said I had lupus and was on steroids, the nurse said to another nurse who was there 'that's doubly vulnerable then'. They noted the lupus as a vulnerability in itself, regardless of the steroids.
I think they all used prior experience with other infections. The UK took pretty serious precautions. It does seem most lupus patients did fine. Those who had trouble were maybe predictable and should have been the ones to really shield.
There still are high risk lupus patients - even vaccinated - but they know who they are.
If a lupus patient has the risk factors that are seen in severe disease in the general public, like, advanced age, high BMI, type 2 diabetes, dementia, organ transplant then they are high risk for those reasons. These are the most prevalent preexisting causes of severe disease and covid deaths.
So this is where I get confused. If there are any medical peeps who can enlighten me I'd love to hear it. I hear if we're not taking immunosuppressants covid shouldn't affect us any worse than the general population and I'm really confused by it. Reason being all the people I know who have had covid post double vaccination have sounded and told me it's like flu (fever, fatigue, chills, bunged up nose and chest etc). Now I've always been told to be careful not to catch flu, get my flu jab and when I have caught it my rheumy in the US would send over tamiflu to try to head it off/lessen it. So I've got used to thinking if I get a viral infection I'm more at risk than the general healthy population, I should be careful as it is likely I'll be affected worse. EG it took me 3 months to fully shake the flu even with tamiflu and everything and I'm only on hydroxy which isn't an immune suppressing drug. Am I wrong entirely? Or if I'm not then am I wrong on covid? As I've treated covid the same as I would the flu since being diagnosed but if it really isn't going to be any different for me than others I'm being massively over cautious... All thoughts appreciated.
Everyone’s case is different. The vaccine response is blunted in lupus patients on high dose steroids and some immunosuppressants. That is now an additional problem. And if that person has kidney disease, heart or lung issues that could be a problem. I have a friend with RA in the US who is a near shielding state as per rheumatologist.
You just can’t paint with a large brush. The hospital that did that very good study did lose lupus patients.
It is interesting that lupus patients did as well as they have done. That is not the case with other infections. It would be interesting to hear a doctor’s account of this.
Severe covid is very different than catching covid. Same is true with community pneumonia and flu. People end up in the hospital or dead not because of breathing issues from a respiratory virus but rather from DIC, thrombosis, sepsis, and or thrombocytopenia. With covid by far the highest percent of deaths and risk of serious disease was in the over 70 group then obesity, CVD, transplants, AIDS, diabetes, and dementia followed. Lupus is not even in top ten. If you have lupus you can also have those same ailments that increase the general public risks but lupus has not been shown to be a significant cause of severe covid disease if you do not have those other high risk comorbidities.
...the NHS Scotland letter says 'you have received this letter as our records show you are coded as having a condition that leads to immunosuppression'.....it's basically casting a much wider net than the BSR/NHS England risk assessments back in March last year....to prioritise those with a chance of more vulnerability who have children in the house over those who don't.......I think!
Was flummoxed to receive a blue envelope letter telling me I'm special so far into the pandemic though! 🙃😜🤣 xxx
As others have said lupus itself does not make you high risk it is the medication that can. There was a rheumatology risk assessment grid created at the beginning of the pandemic which detailed medications and other risks factors to determine the overall risk category. As more knowledge has been gained some advice may have been amended to make more appropriate. Lupus is such a varied condition that you can’t lump all patients in a specific risk group.
I did find it reassuring to receive this letter. I shielded, though I was not asked to shield. Although reading comments, I see there is a spectrum of experiences and circumstances. I did feel with a history of heart, lung, kidney and blood involvement (including low platelets), I should have been in shielding group. I am only on Hydroxychloroquine now but think medical history should have been factored in.
I got this letter too! Strange I didn't get my vaccine any sooner and just had to wait until my age group was called. But very happy my son will get his first vaccine on Sunday. It is a little frustrating, it's been a confusing difficult time for all. Hope your family get vaccinated soon and we are all a little safer 👍
This is odd. I have vasculitis/lupus. I am only on hydroxy 300mg a day. I have been sent Critically Vulnerable category letter endlessly (too many and waste of paper!) from the very beginning of Covid. I am in London. Hard to believe Scotland has such a different take on this subject.
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