Plasmapherisis - DINET Post on Facebook

[mehaller]

A DINET post popped up on Facebook regarding Long Haul Covid and PLEX treatment.  It was a study outo of Adelaide, Australia.  From what I read, it sounded promising for long haulers with POTS symptoms.  Naturally, I lost the link.  Couldnt find it here or on Facebook again.... Anyone see it and have a link NOT in Facebook?  I used search terms "Plex, plasmapheresis, Adelaide, Long Covid."  No joy.

[Sarah Tee]

The doctor leading the study is probably A/Prof Dennis Lau, if that's any help.

[mehaller]

Thanks Sarah.  No joy so far.  I found him on Twitter, but - me no twitter, tried, can't get in.. I'll go through the university

[Sarah Tee]

Urgh, sorry you couldn't find it again. Facebook is so annoying like that sometimes.

I'm just trying to think whether Australia has a database of research studies.

Found it:

https://www.anzctr.org.au/TrialSearch.aspx

Dr Lau has some research studies listed there, but they seem to be "information gathering" rather than testing treatments.

 

I did see that Dr Blitshteyn and colleagues published a paper about treating people with plasmapheresis or SCIG:

https://pubmed.ncbi.nlm.nih.gov/36008726/

(Not so much a trial, but reporting results in 7 patients.)

[Sarah Tee]

I don't know Facebook very well, but maybe the person who does the DINET page shared a post from another organisation that had this info. And then maybe it got deleted or updated with different wording?

[Sarah Tee]

I think I found the post you saw on another Facebook group. It sounds like the researchers have published a case study (one patient) in the American Journal of Medicine and are going to be doing a trial soon. Unfortunately the case study is behind a paywall and there's not even an abstract.

However, the title gives a bit of information: "Plasma exchange improves cognitive function in long-COVID related postural orthostatic tachycardia syndrome and autoimmune neurological dysfunction".

Here's the post:

Quote

 

Researchers from the University of Adelaide report improvement in a #LongCOVID #POTS patient after treatment with plasmapheresis, which removes antibodies from the blood. The patient had a history of joint hypermobility and had been sick with Long COVID POTS for 9 months, requiring a wheelchair. After plasmapheresis, she had significant improvement in cognition, speech, joint pain, and mobility.

 

Dysautonomia International is funding the first plasmapheresis clinical trial in POTS at the University of Adelaide. Please consider making a donation to support this important research: CurePOTS.org. We hope that this treatment will someday be available to everyone living with autoimmune forms of POTS.

 

The journal article is behind a paywall, but here’s the link for anyone interested: www.amjmed.com/article/S0002-9343(23)00100-6/fulltext

 

[Sarah Tee]

I have tried a few "back doors" to see the case study, or even the abstract, but no luck. It still seems to be pending (pre-print/correspondence?), so maybe once it is printed it will have an abstract at least.

I wonder whether the person in the case study has to continue with the plasmapheresis or whether a remission of sorts was achieved.

[Sarah Tee]

I did find an older case study by the same group:

"Plasma Exchange Therapy in Postural Tachycardia Syndrome: A Novel Long-term Approach?"

https://sci-hub.se/https://www.amjmed.com/article/S0002-9343(19)30958-1/fulltext

(You may need to click on "save" under the bird illustration to view this PDF depending on what kind of device you are using.)