Hello I have not posted on here for years, but reaching out for a bit of virtual hand holding.
I was diagnosed with Lupus 7 years ago, end of 2021- 2022 was the worst flare I've had. The treatment (lack of) I received from the hospital and constant pain affected my mental health.
I just about feel I'm coming out the other side of this.
6 months ago I had covid for the first time, and was positive for 20 days and ill for 6 weeks.
It was horrible and absolutely zero help / treatment/advice received.
Since the pandemic started I've received the emails/texts/letters telling me I'm vulnerable, get vaccinated, eligible for anti virals etc.
Today I've tested positive for covid again, reported using the LFT sent to me for being vulnerable. NHS sent a text saying I was eligible for antivirals and local NHS team would arrange delivery.
Then my rheumatology nurse rang to say she had been contacted by NHS covid 119 to provide antivirals but that I was not eligible and then told me to stop taking ibuprofen and go to A & E if I felt worse, then lectured me about people overusing antibiotics. Which I felt was terrible advice.
Later the nurse called back to say my consultant had written a statement she was going to read to me, it said "we do not know why you think you are vulnerable or who told you, but you are not eligible for treatment".
I was upset because for 3 years now I have been receiving emails etc telling me I am and now that I'm ill I'm not?
I love working but fear if I keep flaring like this I will have to give up, which broke me last time, financially and emotionally.
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Beau2016
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Thank you for taking time to reply, I appreciate it.
I'm pretty certain my needs NEVER come into the equation, they've seen me twice in 4 years. Last time telling me pain might be due to me having young children and carrying them around...my kids are teenagers, almost adults and 5ft7 !
Although lupus rash has run riot over my face during the night, I do feel slightly better today.
I’d be inclined to give covid 119 a call again - someone must have placed you on the list with them so they can get to the bottom of that. Explain your medical circumstances and what meds you are on and ask them to clarify the situation. If they feel that you should be given the anti virals then it is down to them to get it sorted. I’d also ask them to confirm whether the vulnerable list is the same as the high risk list as I’m not sure they are. It is possible that the rheumatologist is right that you aren’t vulnerable but if you are high risk you’d qualify for anti virals. I think it’s mainly down to whether your lupus is under control and what meds you are taking. As someone else has said I would then get on to PALS and advise them what has happened and that you haven’t put yourself on the list so how can the rheumatologists override when they have been asked to provide you with a treatment.
There doesn’t seem to be any rhyme or reason on the risk list though - I was taken off the vulnerable list after self listing at the start as I wasn’t on any meds - except in my case it wasn’t because I was settled but because I was reacting to meds and it hadn’t been sorted yet but if I didn’t tick the right boxes I wasn’t put in the list. I shielded anyway as I took the view that uncontrolled lupus made me high risk and I wasn’t taking that chance. Since then I keep getting invited back for more vaccines as “high risk” and had a letter to say that anyone else in my household could be vaccinated but I’ve never had the formal letters to say I am on the list for anything. I came to the conclusion that for anything that made my life easier I’m not vulnerable but if it’s something where I could sue them for getting it wrong then suddenly they aren’t taking the chance! 😂
Good luck and I hope you get something sorted and feel better soon x
Thank you for replying, it does help to know I'm not alone in this.
My lupus is not under control at the moment sadly.
At the start of the pandemic the hospital wrote to me telling me to shield, at the time I was feeling healthy. Then in 2021 they wrote telling me I was vulnerable but no longer on the shielding list.
They've seen me twice in 4 years, and last blood test showed low levels of C3 &4 for the first time in years, but I didn't receive any further treatment or follow up.
I'd just hoped that antivirals might lessen the time i'm too sick to work this time round.
Read on BMJ last night uk spent 2.2bn on antivirals and only a fraction have been given.
Beau, how awful. 😞 But also how typical of the attitude of NHS doctors.A mistake has been made somewhere within the system & the first thought is to blame the patient, and when you're feeling ill as well. You wonder why these people went into a caring profession. They are clearly not suited.
This has made me really sad. Terrible treatment and uncalled for.You said you've had the emails/ texts from the start of pandemic. We're you asked to shield?
Only asking as i didn't have those. However, I've recently had the email saying I after more research I'm now at risk. Only yesterday had another inviting me for covid booster.
I didn't know when we contacted them with a positive result and for antivirals it was passed onto your personal rheumatology team either!
They are so behind and haven't caught up from covid , people are in desperate need of seeing them .
All of this does not excuse the way you have been treated. Phone up 119. Ask them to clarify. Take care x
Thanks Bonny, I was initially told to shield in spring 2020 (I didn't, totally my choice) and then told I was vulnerable but not that vulnerable in 2021. I think they just make it up!!
I didn't know either, I was surprised when they rang because last time 119 told me I would receive antivirals no one contacted me and I was too ill to even get out of bed or look at a screen.
Just seems crazy that they told me off for thinking I was vulnerable, when it was them that called me!!
Anyway I have rang 119 and they said my hospital records indicate I am high risk, but I'm too tired to argue it any more.
They've seen me twice in 4 years, I've had one blood test since 2018.
Anyway despite facial rash rioting over night I feel slightly better today.
That’s not a very nice attitude of the nurse 😔 I think I would write to PALs explaining the whole situation and the nurses bedside manner needs addressing. Fancy telling you to go to A&E with COVID ! The nurse needs to give her head a wobble, I thought we were supposed to stay away from the world if we were positive. Unfortunately there’s too many stories of the nhs being so overwhelmed that they are at breaking point.
Now for you my lovely, if you keep flaring then your lupus isn’t under control and it needs addressing. If you have a nice GP discuss it with them, is it possible it’s not lupus but something else causing pain? I find once you have a particular diagnosis no professional wants to look outside the box because that’s like more work for them!
I’m sending you a big virtual hug, we all need one from time to time. 🫂💐
It just goes round in circles, rash on my face has been awful since December, rheumatology told me to google it(!) and referred me to dermatology, dermatology said their list is too full and won't consider seeing me, GP told me to go to pharmacy, pharmacy told me to go to rheumatology!
This is the same story over and over.
For years I've had neck pain and trouble swallowing, rheumatology told me it was anxiety and tried to give me antidepressants, in the end after I cried they agreed to scan my neck, turned out I have herniated C5&6 and 4cm thyroid cyst.
Honestly I could go on and on!! But I won't cos it doesn't help.
Thank you for your hug and caring enough to share it xxx
Things have indeed fallen apart, when I was first diagnosed actual doctors used to see every 6 months and I was allowed steroids when I needed them. Now I get a nurse telling me to rest and drink water or go to a & e!
I'm so sorry this is similar to your experience too.
I feel the nurse is possibly in the wrong profession.
Her lack of empathy is horrid.others have given you advice on how to sort this out..
The advice given about going to A N Eis ridiculous.
Unless you go in by ambulance,you are left sitting on an ambulance uncomfortable chair for hours.
I was sent by out of hours on ego have a blood test to check ifI’d had a heart attack .
The triage nurse put me down as a chest infection.
I’d told her that I avlways has symptoms resembling chest infection due to Interstitial Lung Disease.
If I really need to go to A N Emy husband takes me to the A N Eat the hospital where I am treated.it’s an extra 20 minutes drive,but it’s worth it.they have all my notes etc and surprisingly THEY LISTEN
The local general hospital seems to have its own agenda.their recent CQCwas poor.
I told them only way I was going to A & E was if I was unconscious and taken against my will, last time I was there was awful and where I got covid from the first time!
Managed to speak to my GP today, who says YES I am on the list for antivirals so 119 are right, but these lists are being updated and changed regularly and hospitals are still using old lists based on medications rather than diagnosis and symptoms.
Local covid coordinator Dr had ok'd antivirals yesterday but as my consultant is charge of prescribing them, looks like I'm not getting them and it'll be too late by tomorrow.
GP has arranged for an 02 monitor to be sent to my house and prescribed more pimecrolimus cream for my rash - rheumatology won't do that either!
with regards to shielding when covid lockdown first began i thought i would be allowed to furlough as would be sent a letter. It never came so i had to work in a supermarket environment. It's only been recently i have received a letter stating my case was over looked and i should have shielded. I have had my first two covid jabs, then caught covid twice; the first time hit me hard but second was better so now i have decided against anymore boosters. As each one triggered a flare. I too have been classed as venerable yet feel totally alone regarding any kind of help with my pain & fatigue. (i have a few conditions) . I feel for you as i know too well what it's like to go around & around in circles asking for help or even just to be listened to x
If you’ve been vaccinated against covid 19 and it’s variants you should be protected against its worse effects and symptoms? 🧐
However your lupus flare up suggests strongly that you need a medications review for your lupus!
Go back to the original prescriber of your lupus meds and get dosages, changes etc adjusted👆
There’s a lot of inflammation in your body and the knock on effects with being infected with the covid virus but you also need a lupus meds review quickly!!
Get talking to your lupus consultant rather than anyone else!👆
Well thats what I'd hoped with the vaccinations too, can't say thats been my experience! I was so ill after the 3rd vaccination and have had covid twice in 6 months following booster!
Unfortunately my Lupus consultant and original prescriber/diagnosis is the same person and I have been asking for help since August 2021 and seen consultant once since then at an appointment where she did nothing. My GP has written letters and tried to get me a new consultant, I saw a pain psychologist who took my case to panel meeting in an attempt to get a new doctor. I've written to PALs. My GP always asks me why haven't they prescribed you anything stronger?
The only response I ever get is very sorry you're unwell, we'll get you sorted soon, let's book a telephone appointment for 6 months time...then they cancel it.
Honestly I'd just assumed this is the way it is with lupus that I should expect to live like this for periods of my life. But reading these replies perhaps not!
I emailed rheumatology yesterday with new photos updating them on hair loss, night sweats, mouth ulcers etc they've not replied.
My GP sent me an O2 monitor yesterday which is showing my heart rate is leaping from 75 to 160 when I stand up or move around. I've told rheumatology I feel dizzy when i stand up but they don't believe me .
There is honestly absolutely no point in talking to my consultant!!
Just wondering whether your GP is trying to determine/identify POTS?
“Postural tachycardia syndrome, also known as postural orthostatic tachycardia syndrome (PoTS), is a condition that causes an abnormal increase in your heart rate after sitting up or standing up. The most common symptoms are feeling lightheaded or dizzy, palpitations (being aware of your heartbeat) and fatigue...” ?
If your GP has issued you with what is called a fingertip pulse oximeter? (I’ve bought one myself) it should also tell you the % of Oxygen, O2 in your blood as well as give you your heart rate.
Normal % oxygen should be >90%!
During covid times many infected patients had % oxygen well below this figure thus suffering respiratory distress and compromised respiration.
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