Long Covid, is it autoimmune?: Really interesting... - PMRGCAuk

PMRGCAuk

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Long Covid, is it autoimmune?

HeronNS profile image
20 Replies

Really interesting interview, first item in this program.

cbc.ca/listen/live-radio/1-...

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HeronNS profile image
HeronNS
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20 Replies
PMRpro profile image
PMRproAmbassador

I've been saying since it first appeared that it is a new version of ME - a post-viral syndrome that very probably IS an autoimmune manifestation. Which is what annoys me so much about the fuss about Long Covid - millions of people with similar problems have been ignored for years and told it is all in the mind ...

HeronNS profile image
HeronNS in reply toPMRpro

I liked that in the interview she points out that the research being done on long covid will very likely lead to new thinking about existing autoimmune conditions.

in reply toPMRpro

I've heard that being on Pred actually protects us from getting Covid

PMRpro profile image
PMRproAmbassador in reply to

I don't think it prevents us CATCHING it - it might prevent it being severe but even that isn't sure.

tangocharlie profile image
tangocharlie in reply toPMRpro

Do you know what the research shows on that? I'm still totally confused that in the early days of Covid the docs were trying to get people off steroids, even low doses, asap and then within months steroids were one of the treatments for it. And if we get Covid we are supposed to increase our steroids now under 'Sick day rules'. It's all so confusing

PMRpro profile image
PMRproAmbassador in reply totangocharlie

I don't think it is clear. With the lower doses they were worried about catching it in the first place as there was no treatment or vaccine. Now it is a whole new ball game - treatments and prophylaxis like they have for HIV, vaccines to reduce the risk in the first place. And a much less unpleasant variant - logical to have expected it because the intent of a virus is to replicate and that means as many hosts as possible. If the virus kills the host it has failed because that means a shorter time to move on.

tangocharlie profile image
tangocharlie in reply toPMRpro

I see that as a plus though, that something is finally changing and being done, and people will get more help and empathy/sympathy

PMRpro profile image
PMRproAmbassador in reply totangocharlie

For Long Covid maybe - not convinced we will get any higher up the pecking order. The only benefit may be if they find the mechanism for the symptoms.

Purplecrow profile image
Purplecrow

It seems coincidental that symptoms of long Covid (?) share similarities with ME, PMR, and perhaps other under- researched disorders. On a positive note, the attention being paid to to Covid, may lead to better understanding of ME , PMR, and some of the other disorders which have not been on the lists of heavily funded research. This is a particularly Interesting interview because I suspect I am experiencing some of the symptoms of long Covid. (Brain fog, mild Memory problems, regular headaches which are fairly mild, but regularly occurring, and fatigue). It's hard to tease out which symptoms are due to PMR, and which are not.

Keep us posted when u run across research articles.

Thanks, Jerri

mgrogers99 profile image
mgrogers99

Thank you for sharing a very interesting interview. I have been diagnosed with long covid and just completed rehab for some of my symptoms. My PMR symptoms are very different than my covid symptoms were though-- the worst being respiratory. Covid has killed four people I knew...the fourth was buried today.

PMRpro profile image
PMRproAmbassador in reply tomgrogers99

Sorry to hear that - a side that really isn't emphasised enough now the perception is that omicron is "mild". It was in the paper here yesterday that a family in Sicily has lost 6 members to Covid. None was vaccinated.

mgrogers99 profile image
mgrogers99 in reply toPMRpro

Two of the four died before the vaccines were manufactured, the third was antivaccine and the fourth in poor health but just 70. When they are trying to get well at home then go to the emergency room, I am entirely pessimistic about the outcome.

john140 profile image
john140

I have read that some Covid vaccines have created an autoimmune response in some patients including things like Alopecia

PMRpro profile image
PMRproAmbassador in reply tojohn140

Nothing like the numbers who had Covid and developed Long Covid though. Not to mention that unvaccinated people who catch Covid are far more likely to die.

HeronNS profile image
HeronNS in reply tojohn140

The safety profile of covid vaccines is commendable. Note that in Canada most of our vaccinations have been Pfizer, Moderna and, a distant third, Astra-Zeneca.

health-infobase.canada.ca/c...

john140 profile image
john140 in reply toHeronNS

Well personally myself and my wife were ill for at least 2 days after Moderna and my wife is never normally Ill !

PMRpro profile image
PMRproAmbassador in reply tojohn140

Hardly compares to the potential illness with Covid and no vaccine!!

HeronNS profile image
HeronNS in reply tojohn140

Vaccine reactions are quite common and nearly always harmless. My husband was completely wiped out after both his Shingrix vaccines, two days for the second one, just lay around feeling like he had flu. I also reacted quite strongly, but not for as long nor as severely. In fact he reacted so badly I didn't commit to having my vaccine for some time, even after a chicken pox test confirmed I had had CP in the past. It was only after so much talk about vaccines, plus a lot of discussion about how horrid shingles was, that I bit the bullet. Had to get the pharmacist to talk me back into having it when I arrived for my appointment. I'm so glad now that I had it, well them actually. My second Shingrix shot was the sixth vaccination I'd had since last April, counting flu and covidX3!

tangocharlie profile image
tangocharlie

The similarities are uncanny. And for many people. I believe self included, the PMR was possibly triggered by a virus as the final straw for the immune system.

PMRpro profile image
PMRproAmbassador in reply totangocharlie

There are a lot of symptoms in Long Covid that go beyond PMR - but all common in autoimmune conditions. Plus the neurological ones which are far scarier.

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