Long Covid? Or something from the autoimmune menu? - LUPUS UK

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Long Covid? Or something from the autoimmune menu?

PMRpro
PMRpro

theguardian.com/world/2020/...

Thought this was interesting.

47 Replies
oldestnewest

Very interesting - thank you!

Although interesting and finally reading that someone has noticed that ME at least is similar it does worry me that a doctor suffering from fatigue and probably brain fog is seeing patients. As it took me 3 attempts today to put something in the fridge [I tried the lounge and 2 cupboards first] I wouldn't feel safe with a foggy doctor.

Zoe896
Zoe896 in reply to suzannah16

Should the doctor in the article self-isolate? She could be transmitting Covid-19 to her patients?!... and be a danger to her patients due to her self-described brain fog. Not good at all.

PMRpro
PMRpro in reply to Zoe896

This is LONG covid, the term is applied to patients in the chronic recovery stagem, not the acute period.

Zoe896
Zoe896 in reply to PMRpro

Hi PMRpro,

So she is Covid-19 free and will not transfer the virus to her patients? 🤔

As @suzannah16 has said what if the GP has severe brain fog and cannot diagnose, treat, counsel or prescribe for her patients lucidly?🤔

Should the doctor be practising so soon after having treatment herself for Long COVID-19?

Can we be sure?🤔

LalSD
LalSD in reply to suzannah16

😀😀😀 Brilliant!

Zoe896
Zoe896 in reply to LalSD

🤔😟

Hi, Thanks for the link to the Guardian article but have they missed something?🤔

ME is mentioned and post viral chronic fatigue syndrome but NOT lupus or AI diseases! WHY?

Do researchers and long covid patients, medics need to wake up?...or see other links!🤔

Strange but the long covid patient is actually a GP!

Is it taboo to mention lupus or otherAI?

Is this an example of unconscious gaslighting “avoidance” by the doctor so other colleagues will not accuse her of symptoms being “all in her mind”?

Mind games here?

Are we lupus sufferers having to wait for the light bulb moment in the immunology research community?

JGBH
JGBH in reply to Ickybicky

Indeed, no mention of autoimmune diseases such as rheumatoid arthritis, Sjogren's. etc and lupus of course. It's somewhat concerning. Medics need to wake up, absolutely!

Ickybicky
Ickybicky in reply to JGBH

Hi,Absolutely!👏

According to an authoritative website on rare AI diseases there are over 100 separate, clearly identifiable AI diseases!

Thanks for naming some above but what about subtypes of AI eg. CTD, MCTD, APS, SLE, DLE, LUPUS NEPHRITIS and its various classes, vasculitis, thyroid autoimmune disease, MS etc etc.

Not only do these diseases morph into others some lupus patientshave said they’ve got so many types to deal with plus all the medication and side effects.

Long covid is due to a virus. Covid-19 in its guile seems to hijack the human immune system in different ways.

AI diseases are not caused by a named virus!

That’s the fundamental difference but many doctors particularly GPs do not seem to recognise this. Now that vaccines are in the pipeline for the public who knows what the future holds?🤔

KayHimm
KayHimm in reply to Ickybicky

They are working hard to determine what the nature of the long term symptoms is. Researchers are definitely looking into all possibilities. There may be different mechanisms. Some may have CFS, some inflammatory issues, some lingering virus, and some will develop full blown autoimmune diseases.

I just read an article by two immunologists. It doesn’t look like anything is being missed.

I have post-inflammatory issues from Covid and have no sense the doctors are ruling anything out with Covid. But they stress how much they don’t know. It is conceding.

KayHimm
KayHimm in reply to KayHimm

concerning

PMRpro
PMRpro in reply to KayHimm

To some extent there must be some parallels between PMR/GCA and long Covid because the IL-6 cytokine is what causes our problems - and why tocilizumab shows an effect in the severe cases

KayHimm
KayHimm in reply to PMRpro

There are going to be lots of connections. As my rheumatologist told me yesterday, it is known that certain infections precipitate autoimmune disease. They are noting anti-phospholipid antibodies in patients with cytokine storm.

I think we are going to be left with many chronically ill people from this pandemic.

PMRpro
PMRpro in reply to KayHimm

Which may in the long term be worse than the acute problems now. They may come to regret telling younger people they would be less likely to be ill/at risk. Like the "masks don't help" bit.

KayHimm
KayHimm in reply to PMRpro

My sentiments exactly. I just told my nephew, who has canceled holiday travel, the same thing regarding his seven month old. All ages need to be concerned. Pediatricians seem worried.

PMRpro
PMRpro in reply to KayHimm

I think it is why this second spike is worse than the first - the younger people have been blasee. A local World Cup skier in his late 30s and his family have all tested positive - and he is saying he has it badly, this is no joke whatever anyone tries to tell you. We, on the other hand, have been scared enough to preserve ourselves and accept the limitations - what's keeping out of crowds and not spending money for a year to be able to live for a lot longer? I was astounded at the bank balance yesterday!!

Ickybicky
Ickybicky in reply to PMRpro

Yes absolutely!The Government‘s advice to people in their twenties was stupid? It actually encouraged them to take risks, believing they will not catch it or if they did they’ll get over it quickly. This is now false.

Many have caught COVID-19 and are now suffering LONG COVID with all sorts of unpleasant symptoms:

theguardian.com/world/2020/...

Zoe896
Zoe896 in reply to PMRpro

PMRpro ,

tocilizumab for what particular AI disease?

PMRpro
PMRpro in reply to Zoe896

Any where IL-6 is the cytokine involved, GCA and PMR being two and some cases of RA. In Covid, IL-6 is involved in the cytokine storm that leads to the respiratory tract problems.

Zoe896
Zoe896 in reply to PMRpro

PMRpro ,

tocilizumab for what particular AI disease?

More discussion here:healthunlocked.com/lupusuk/...

I think it is a matter of time that they will discover the similarities with Lupus, too. And the famous plaqunil would be beneficial to moderate the misbehaving immune system.

They're getting there, slowly but surely....a couple of sentences on AI links:

"Fatigue isn’t only associated with ME/CFS, but with many inflammatory illnesses. Time will tell if the fatigue of long Covid is akin to the fatigue of CFS, or more akin to the fatigue of multiple sclerosis or rheumatoid arthritis,”

...and also potentially an end to the Graded ExerciseTreatment cure....

by telling people to carry on even if their tiredness increases is dangerous to those suffering post-exertional malaise,” ....GET could be counterproductive in those patients presenting with a “boom and bust” pattern of symptoms HOORAY

...and the importance of pacing has a cameo role too ! :)

Little by little, the AI world is crashing into long covid! xxxx

MEGS53
MEGS53 in reply to eekt

.........or long Covid is crashing into the AI world! xxx

PMRpro
PMRpro in reply to MEGS53

Don't care which way - as long as it means they take some notice!!!

MEGS53
MEGS53 in reply to PMRpro

I couldn't agree more! 👍

Kevin53
Kevin53 in reply to PMRpro

Precisely

eekt
eekt in reply to MEGS53

That's more like it! Thank you! xxxx :)

MEGS53
MEGS53 in reply to eekt

😀😀😀

Extremely interesting, thank you.

The first panphlet I was ever handed on Lupus in 1985 said - the cause was unknown but they suspected it could be triggered by a virus. It was about then when Doctors were thinking of some lupus research. Recently with covid I've wondered wether perhaps its more like an epigenetic vaunerability passed down from a historical plague ?.....Its just so freakishly similar - including the unexplained fatigue.

As for pushing people with ME into excersise. I have POTs which is considered one of the elements of ME - although damage of the dorsal root ganglia from SLE - or protracted B12 and iron deficiency etc. seems a pretty logical exlanation for me.

I also became badly de- conditioned when told not to even move if I could help it with a renal flare.

I know excersise in the ME world is contraversial for very good reason - but my GP refused to prescribe POTs meds until I tried the excersise.

It was the most anti - intuitive thing I've ever done and I still fall into a post excersise malaise occasionally and as always I run out of umph before pretty much everyone. But I had a very good medical physiologist- gently ease me into it and then left me to it ( and would gently nudge me away from hanging upside down on gym equipment 😁 for relief )

Now a few years on - I still have POTs, but not nearly as badly - the BP and heart fluctuations are far less extreme - and devastating heart & BP plunge on standing is near gone. Dispite a dodgy systoltic - I've never had more energy and less depression in my life.

Muscles instead of compression stockings - stronger heart to compensate damaged nerves - better circulation and close to a cure for brain fog as I've ever found - as excersise gets some much needed extra blood to my wilting brain.

I can't speak to ME or post covid syndrome - but I'd recommend anybody in SLE remmision who has become decondtioned to try it. Its made me feel mentally and physically stronger.

You really don't have to exert yourself too much to get good results.

Simple squats and step ups are good during lock down.

Kevin53
Kevin53 in reply to Freckle1000

lupusuk-virtual.org.uk/home

Freckle1000
Freckle1000 in reply to Kevin53

Thankyou !

eekt
eekt in reply to Freckle1000

Interestingly a friend was speaking to a HCP cousin who was claiming (as current thinking) that the bubonic plague in the Dark Ages produced a genetic clean out and those with illnesses now thought to be AI eg eczema survived as their open wounds stimulated an ongoing immune response that protected against the plague, meaning nowadays their descendants can ride out Covid without problem, like her 83-year-old uncle in a care home where 17 dies, who suffered nothing more than no appetite for a day................................last rheumy I saw told me 'we've done research' and that lupus patients aren't impacted any more severely by covid..

Anyway, there does seem to be something genetic about covid ?

Yes, all for exercise, just finding the right amount that doesn't leave you laid up for days is the trick to it :) ...did someone say 'pacing' ? xxxx

PMRpro
PMRpro in reply to eekt

Hehe - yes, me. Ad nauseum ;)

MEGS53
MEGS53 in reply to eekt

....so AI disorders may have an epigenetic background?

😬😬😬

Freckle1000
Freckle1000 in reply to MEGS53

Just a thought 🙂

MEGS53
MEGS53 in reply to Freckle1000

......I have a research background

Zoe896
Zoe896 in reply to Freckle1000

Had to find out more about PoTS or postural tachycardia syndrome:Postural Tachycardia Syndrome:

...”Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistant increase in heart rate from the lying to upright position....”😭

Freckle1000
Freckle1000 in reply to Zoe896

Yep, that's the one. : )

A drug for rheumatoid arthritis may help coronavirus patients in intensive care, research from Imperial College London has found. The drug, tocilizumab, suppresses the immune system, which goes into overdrive in some coronavirus patients. The study has not been formally published yet, but researcher Anthony Gordon said the findings were ‘very encouraging’.

PMRpro
PMRpro in reply to Kevin53

It is also used for vasculitis - GCA. It's an IL-6 antagonist.

The oft quoted slogan, “we must follow the science” BUT the science of immunology is being led down so many different paths by COVID-19 🤔 ...not many certainties other than full shielding against this airborne virus and following strict hygienic practices totally : “prevention is better than cure!

PMRpro
PMRpro in reply to Ickybicky

Absolutely!

Thoughts on COVID-19 and autoimmune diseases, letter (April 2020) from BMJ, it seems the jury is still out,

lupus.bmj.com/content/7/1/e...

PMRpro
PMRpro in reply to Zoe896

April 2020 is almost pre-history in Covud terms - but what I was meaning is something different. Not how we who already have a/i disorders would cope with Covid but that Covid is triggering an epidemic of new a/i disorders, with some form of vasculitis high up the list.