ard.bmj.com/content/annrheu....
Results suggested 70% of the patients had infectious autoimmune activation.
It also says:
As several of the reported autoantibodies are disease markers and can be pathogenic, one should be cautious before transferring autoantibodies, along with neutralising antibodies, into severely affected patients.
Thanks to suzannah16 for raising an interesting and important question!
xxx
To be hoped they look at them before being too gung-ho with convalescent plasma then!
Or indeed antibody vaccines... 
Noted that the NICE/RCGP guidelines for Post-Covid Syndrome published yesterday doesn't include antibody testing, and with PCS 'diagnosis' based on the absence of any other cause for PCS, this will mean anyone developing autoimmunity after Covid .....will be sent to a psych, sigh, like many lupies....................
xxx
I said on another forum yesterday I'm really getting tee'd off about long Covid - special clinics already - and how long did it take most of us to get someone to listen to us? You've had Covid, 6 months later you still can't walk for more than 5mins without getting breathless - patience please. It's what has been classed for years as ME/CFS - known to often be triggered by a viral infection. To some extent it isn't new and there isn't a magic cure. Many of us had our lives turned upside down and were left to work it out for ourselves.
I know, I'm a horrible person.
Me too, though I had hoped - as I said somewhere else - us autoimmuners could sneak in the back door of long-covid clinics on the back of enigmatic fatigue and brain fog, but yesterday's Holyrood briefing left me in despair as Scotland will have no clinics, just the 'excellent primary care network' which will 'manage' long-covid with referrals to phsyios, psychs and community nurses for rehabilitation, in complete denial of the fact that long-covid can cause organ damage and co too (like lupus) which barely has a mention in the PCS guideline so will be missed by GPs, who, in the main, don't know ANA from ANCA never mind the possibility of silent nephritis...............so it seems the policy-makers need some education on the impact of diverting resources away from rheumatology to covid care AND the management of PCS aka ME/CFS/SLE...
Thanks for the opportunity to rant 🙃...now that's off my chest, off to enjoy a rare sunny day xxx
Someone got their vaccine phone call mid-Friday afternoon which was fine until she mentioned STEROIDS - panic, call your GP (oh hahahahahaha - at 4pm????). So told to arrive on Monday and mention the pred. Given that they are working on over 80s at present there are likely to be a LOT of patients with a history of PMR/GCA and pred. WHO drew up the training manual?????
Oh yes - lots of WTF moments here - no wonder a/i patients get a short straw is there?
Indeed, vets will know to ask about immunosuppressants before vaccinating however the training manual says thus:
*Non-clinical staff such as general practice and clinic receptionists, staff who work in social services......These staff do not require a course which covers all of the core curriculum topics -a general awareness/information session would be beneficial.*
The secretary who gave me my flu jab couldn't tell my left arm from right...
xxx
😂😂😂
Doesn’t surprise me. A LOT of physicians are complaining after getting COVID. As PMR said, they all look like CFS and not uncommon after viral infection. But they also have more of a dysautonomia pattern beyond CFS. Although fatigued, inappropriate tachycardia with resulting shortness of breath is commonly described. Some are going on short term disability.
I hope it brings awareness to what we go through but I must be honest, no one is really making this link. We are still the “disabled” while they are the “temporarily disabled”. At least that’s the way it feels. Like they don’t understand that the long effects they are having may not go away in a few months. They don’t understand that this is what we deal with on a daily basis because we’ve been warriors for so long we just push through. Long haulers still think they have it worse than us because it’s so acute.
I’ve tried giving tips - compression stockings, liquid IV/hydration and possible short course of beta blockers. Some are thankful but about half still believe symptoms will just disappear or they can tough through them. Waiting for that rude awakening esp among the anti-vaxxers. 🙄
Interesting times. Thanks for sharing eekt! Hope you’re doing as well as can be. ❤️ xx
Thanks Jmiller, hunkering down for a long haul people-avoidance, with a post-Christmas lockdown just announced in this part of the world and a suspicion that the local small general hospital 🤪 is the source of the much more transmittable variant ravaging London , with case quadrupling the past ten days...I put it down to my ex-rheumatologist, the only one there, who (as an aside) on 20th March decided all immunosuppression should stop based on his very limited grasp of lupus and the public health guidelines...🙄
Yes, a few doctors have made the BBC news headlines with their tales of the fatigue they have to bear, and even our Health Minister said the F-word in live on tv in a public briefing....fatigue is now a real problem, as is that enigmatic 'brain fog'...so maybe, just maybe, more doctors will come along to say their GI system has simply ceased to function with no visible cause, or that their eyes don't adjust to headlights, or they fall on their face without warning and then autonomic dysfunction will become thing too, because in the UK it's classed as somatic as there's no code for it....................
A year or two and the long-haulers will come around to the fact it's not going away...what we need is some decent research into the impact on autoimmuners and target some covid medics so they get it ! And spread the word !
Great to hear from you...keep on keeping on! We're the survival experts so all we need to do is treat everyone as infectious 🙃😉👍 xxx
😮😳😳😮😳😫😮😫😳😮 To everything above. Mutant variants! No code.... somatic!!!? Aaaaah. Stay safe!
Yes, indeedy, let's call you crazy because computer says no...
Did someone say 'hell is other people' ? ...except by Zoom 🙃😉👍 xxx
I developed atrial fibrillation about the same time the rest of my PMR symptoms appeared. I wasn't diagnosed for over 5 years - but when a/f made its presence felt in a drug reaction the local cardiology expert in arrythmias said immediately it was due to a/i damage to the electrical system. Italy doesn't get much credence in the UK - look at how we were ignored about Covid in March - but I have heard a lot of snippets here that make sense. But the UK has the best of everything in the world - they think ...
,,,an army that can build emergency hospital in a couple of weeks?
1993 in Germany I was 'tired all the time' and the walk-in GP spent half an hour chatting to me then sent me for a abdo CT (then and there!)...........?!? I thought...she was thinking AI after gleaning lifestyle and family history info through casual talk...all that showed was a secondary spleen then
Sorry to hear of five years no diagnosis PMRpro...but in good hands now xxx
Possibly - but no staff to run it ...
They were designed to 'bring hope' and a quarter of the area is for chiller units...the less said about other areas of military preparedness, the better.. xxx
Oh my goodness....a marker pen might be an idea?? Generally, doctors imagining themselves in the patient's place would be a good idea! Thank you! xxx
How right you are ! Peer review all round would be dandy for us lupies! xxx
I think doctors all over have been aware of autoimmune implications from before the virus hit Europe. That is what the cytokine storm is. There are multitudes of articles on every aspect of autoimmunity in Covid from the deadly autoimmune reaction that is the cytokine storm to the post covid inflammatory conditions.
Sorry, but my impression is completely different from yours. One reason you may be having a hard time getting appointments with your rheumatologist is that they are consulting on critically ill covid patients who need a rheumatologist’s knowledge of drugs to tone down the immune system.
No « out of the box » thinking is necessary. The accepted definition of Covid is that of a vascular illness that causes serious immune dysregulation.
Not sure how researchers could be focused on Covid and not addressing the autoimmune aspects. That is one of the main things killing people as I understand it.
Really? I could show you an email from a friend who is an ICU doctor and worked the surge in NYC. He explicitly referred to covid as a vascular illness with severe immune dysregulation. He retired in June, so that was a while back. Doctors were sharing information, so I would think UK doctors knew what was happening.
They still don’t know all the mechanisms of long covid. I know for sure that my pulmonologist said they were thinking « autoimmunity » was going to be one cause. They are trying inhaled steroids for the lung issues, hoping it helps with the inflammation.
We just have to agree to disagree. I have been hearing and reading of inflammatory issues for a long time now.
It would be great to have some links Kayhimm, as in the UK, Covid is firmly not in the AI camp...the NICE guideline* (NICE is the official UK channel for medical best practice) published on 18th December jointly with the RCGP has given long covid a name: Post Covid Syndrome (syndrome being used in the UK for an illness that has no clearly defined etiology - Crohn's was a 'syndrome' in the 90s). However there is no mention of AI at all, however the list of the most common PCS symptoms looks remarkably similar to lupus....organ damage comes later
The survey I posted about is one of the very few research papers on an AI-Covid link I turned up with a simple google, so don't hold out on us if you can point us to more Kayhimm! The vast amounts of covid research could be of huge benefit to us lupies (one the link has been made...) xxx
*nice.org.uk/guidance/ng188/...
eekt -
Until something is clear and established, it has to be called a syndrome. It takes a long time to establish the mechanisms of disease. They still debate a lot of them.
If I can get a tech savvy person to send links for me, I will. For starters:
New Évidence Suggests COVID-19 Could Be a Kind of Autoimmune Disease. Here is Why. ScienceAlert
Autoantibody Covid link « potentially game-changing - RACGP
Could Covid trigger autoimmune disease in some people? The Scientist
Autoinflammatory and autoimmune conditions at the crossroad of COVID-19
COVID-19 and Autoimmunity
Nothing is established but at least in the US there is a major search for the links in long covid. Autoimmunity is in there.
I don’t why I can’t send links or photos.
Xk
Thanks for all these KayHimm! The Yale study is brand new and still a preprint (medrxiv.org/content/10.1101... wide range of autoantibodies in Covid, none Covid-specific...many uncommon or rare leading to wide-ranging symptoms with big effects ...sounds familiar !
Seems there will be a flight ban from NYC very shortly...the UK will be a whole island in self-isolation (now why didn't something think of that nine months ago...)
xxx
Not sure I would go so far as to link lupus with long covid. Most people I have read about are not showing specifically lupus symptoms like nephritis, pleurisy or rashes. Some definitely have myocarditis and it may be the same as what lupus patients get.
My take away is that they have been getting lots of positive auto-antibody tests in Covid patients and they are very concerned. It is too early to know if these people will develop lupus or RA or another autoimmune disease.
I don’t get the sense they can tell yet if the long covid is inflammatory but from what my pulmonologist said, they suspect it. Seems we agree they are unclear. I seemed to have had an inflammatory post covid response and did respond to steroid inhaler. Sadly, most of my doctors’ patients are not responding. So it is complicated and discouraging. I know a young woman with breathing issues from Covid who just started the steroids and seems to be responding. Maybe we were the exception, but both of us were take seriously. She had to have a heart MRI to rule out the serious heart stuff.
I think the people with the vaguer symptoms and maybe in areas with less cases were having a different experience and not being believed.
The doctors here probably do describe covid as a respiratory illness. I was unclear. My friend’s words were actually « attacks multiple organs with systemic vascular pathophysiology and dysregulated immune response. » That is the big lupus connection. Doctors even described critically ill Covid patients as looking like a lupus patient.
So yes, think we agree. And I do believe we will see lots of people suffering from the effects of this virus for a long time, maybe a life-time as with us.
I just remembered my rheumatologist mentioning post inflammatory lung and renal issues with Covid. So maybe there is a lupus-type of kidney issue in long covid. Will see if I can find anything on that.
Every day's a school day! 🙃 xxx
eekt -
If you are interested in understanding how covid went from being a respiratory to a vascular disease, go to:
Breakthroughs.com
« Understanding COVID-19 as a Vascular Disease. They even have graphics!
No wonder my friend and other ICU doctors recognized this early on. They are the most intimately involved with the patients when the disease is getting out of control. They had to figure out why it was behaving the way it was. XK
Positive covid test today
Tested positive to covid and have lupus
ANA negative but tested positive for LA and smooth muscle antibodies Our ADAPT Study needs you NOW! Let’s improve mental health & quality of life for patients with our Dr Melanie Sloan & Co
Hcq new studies released last week show differing results to early studies.
