Covid19 is starting to remind me of CAPS

[Roarah]

Has anyone else seen the resemblance of severe covid19 to catastrophic Antiphospholipid syndrome? High D dimer, pulmonary embolism, kidney and liver failure with high cytokine Storm. Treatments are similar as well. Plasma, monoclonal antibodies, HCQ and now most recent success stories include anticoagulant therapy specifically with heparin drip. Just an observation.

medrxiv.org/content/10.1101...

ncbi.nlm.nih.gov/pubmed/322...

[KayHimm]

I don’t know enough about CAPS to say, but the average person is certainly becoming familiar with life-threatening inflammatory complications, right?

XK

[Roarah]

I just read in today's NEJM that a Chinese hospital noted that severe COVID 19 patients had high titre's of Antiphospholipid antibodies, but infection is known to cause transient APLAs so it does not mean we are at greater risk necessarily. I had shingles when I stroked and my highest antibodies were present weeks after a flu shot so it could also maybe be the second hit therory happening to some patients with undiagnosed APLAs. Who knows.

[Treetop33]

I just looked up the study nejm.org/doi/full/10.1056/N....

Didn't realise APS can also arise from viral load (transiently, but still).

I think maybe us autoimmune people hold a few clues on Covid 19!

[Roarah in reply to Treetop33]

APS needs two sets of positive antibodies plus a clotting or multiple miscarriages because it is known that transient antibodies are very common. Cancer can also cause transient antiphospholipid antibodies this is why many cancer patients have pe and strokes.

I think this novel virus, as a spiked protein, is causing il6 to increase in response to fight it there by setting off a cytokine storm which includes raising clotting cascades and beta2glycopotien 1 antibodies to attack the spike proteins. One way heparin works Is it decreases il-6 there by lessening the clotting cascade possibilities. They have known for months that a high D-dimer was indicative of more severe disease and that lead to trials of heparin. Other us doctors mention people seem to dying like they have decompression sickness with multiple clotting issues.

[suzannah16]

almost makes me laugh when the recovered patients talk of the pain and fatigue, do you think they will remember how it felt next time we say to someone that we live with it 24/7 and not just a few weeks?

[Roarah in reply to suzannah16]

I am fortunate my disease has never been 24/7. I seem to flare more with other illnesses or if I let go of healthy life style practices. My lifestyle luckily seems to be able to make or break my antibody load.

When I read that meditation has been proven to lower il-6 as does high fiber and moderate exercise I really became an addict to these everyday practices and since all my antibodies disappeared within a year I am a believer. These practices also protect against catching viruses and flu. Hopefully this coronavirus is also protected by healthy living.

HCQ and other drugs work too in lowering il-6. I hope you can find a successful treatment and get your life back too.

[Jumper99]

d-diner isn’t to be relied on for APS patients as it’s inaccurate. So this isn’t a similarity.

Damage to kidneys and liver would be from clots in CAPS as CAPS is multiple clots in a short space of time. Is this the same reason for the damage in covid 19? HCQ is a treatment for APS, not confined to treatment for CAPs. It not classed as an anticoagulant

[Roarah in reply to Jumper99]

Most current APS hemotologist in the US now do rely on d-dimer numbers in regards to if one can safely come off warfarin if consistently negative after many years. 100 percent accurate, no but a negative d-dimer is very specific to lack of clotting cascade. D-dimer is also highly relevant in pregnancy treatment successfulness in APS.

Microclots with in the lungs is also very recognized in COVID patients in addition to liver, kidney and brain issues. Patients are also dying of heart attacks and having strokes during hospitalization. Some doctors have stated that the bodily damage is like the patients are in an unpressurized plane.

Here, inregards to COVID19, High d-dimer is indictitive to DIC and thrombosis and many viruses and cancers are known to raise B2GP1 antibodies because immune systems go after the foreign proteins invading the system. My theory is that this virus resemble or attach to b2gp1 and then our systems produce antibodies to attatck our own B2GP1 and set off a clotting cascade and cytokine Storm. Heparin is the anticoagulant now being trialed that I was referring to, not HCQ.

[Jumper99 in reply to Roarah]

My consultant says that d-dimer is inaccurate for APS patients because it’s inaccurate for all clotting illnesses. APL antibodies are known to rise in people without APS because of certain infections and viruses. That’s why we do two sets of blood tests. So I don’t think there is any proof at all that the Coronavirus has anything to do with APS. You actually mentioned HCQ in your original post.

[Roarah in reply to Jumper99]

I think I might be expressing my thoughts wrong. I do not think COVID has any thing at all to do with Antiphospholipid syndrome I think it has possibly a lot to do with beta2glycoprotien1 and antibody production against it. CAPS is often found as a first incident rather than in existing diagnosed patients with APS. I think this is like CAPS more than APS. Caps is known to be triggered by sepsis.

[Jumper99 in reply to Roarah]

It may be that my comprehension levels are low at the moment and I haven’t followed you correctly. I think I understand now, thank you.

[Jmiller623]

There’s been a lot of discussion about this on physician forums. Patients are even getting livedo and rashes like APS patients. High d-dimer, ferritin and fibrinogen. There seems to be 2 different clotting presentations.

1. More like mild DIC with mild fibrinogen consumption. Evidence of micro vascular thrombosis esp in lungs caused by endothelial damage from robust inflammation to virus. Causes activation of extrinsic clotting cascade.

2. Cross reactivity between Ab used to fight virus and our own phospholipids. Viruses are known to be very enriched in glycoproteins and phospholipids. This would probably be more like APS and cause larger thrombosis.

I see the livedo rash and that horrible hot red skin we all get pop up in pictures. They look mostly female. I suggested sending off an ANA just in case the virus hastened a new AID diagnosis.

Anyone with a history of clots and COVID positive, I’d definitely put on full dose anticoagulation until the virus passes. Maybe ppx LMWH for those at risk (immobile, coronary artery disease, lung disease, cancer) with no clot history. For anyone else low risk, full dose aspirin all the way. There’s also been discussion of using pentoxifylline which is like aspirin but a bit safer.

Anyways, that’s a lot. But docs are picking up on this but don’t know what to do about it. It did make me wonder if the variability in HCQ success is more related to its antiplatelet activity and not the immune modulation profile.

[KayHimm in reply to Jmiller623]

Wow - so much to take in. You are sure on top of this. Very complicated, right? It goes to show you really have to understand this stuff at a deep level.

Would you say both are toxic inflammatory responses then?

😅k

[Jmiller623 in reply to KayHimm]

Most definitely. It’s not the virus that directly kills, it’s definitely the robust inflammatory response causing a pseudo sepsis picture and multi organ failure.

Once intubated, chances of extubation and surviving are 10% or 15% on a good day. Seems a good portion are male and obese which leads me to believe that obesity hypoventilation is adding to resp failure. For common folk, the weight of your chest is hard to push up when you breathe in with already stressed lungs. Your muscles tire out quickly. So docs put you on your belly to breathe and take away the extra chest weight. This is called proning. In case y’all have seen the word and want to know what it means.

I’ve been keeping up on FB forums. Like a Plaquenil drill sergeant rebuking HCQ studies all day long. Never gets old.

[KayHimm in reply to Jmiller623]

Thanks! Keep us updated. 😅

[Roarah in reply to Jmiller623]

TPA is also showing some success in treatment in Chicago I believe.

[Jmiller623 in reply to Roarah]

Wouldn’t surprise me. A one and done. Easy in easy out. But wouldn’t use in anyone with a high risk of bleeding or prior stroke for fear of it converting to a spontaneous hemorrhagic one. Low risk but with other options TPA probably not the best choice for everyone.

[Jumper99 in reply to Jmiller623]

I may be wrong in my belief that the two aren't connected. But if they are it will be interesting also because so far more men than women are getting the virus badly. So the opposite of lupus and APS. I just read an article in The Guardian (relatively reliable newspaper in the UK) that says men have a weaker immune system which I’ve never heard before.

Also I was interested that they put people in the prone position if they are bad. Apparently more of the lungs are at the back than the front. (That explains why they made me have a CT scan lying on my front when looking at my lungs recently maybe?)

[bookish in reply to Jumper99]

I've been doing some extra breathing exercises, including lying on my front, since seeing a clip from Youtube included in Micki Rose's article purehealthclinic.co.uk/2020.... (This is being updated daily so if the page has gone when you look, either search coronavirus or update the date!)

[Jumper99 in reply to bookish]

I saw a video about breathing exercise if you had covid-19 and that had the same thing. Said don’t sleep on your back. May even have been the same video! Thanks for reminding me xx

[bookish in reply to Jmiller623]

Please has there been any more information about advisedness of aspirin re coronavirus? NSAIDs seem to be questionable and paracetamol is being pushed instead with some suggesting aspirin may be not such a good idea although clearly telling you to keep taking it if you are on it. Not quite sure where that leaves us. I can't get a diagnosis as difference of opinion and no clot although have been sent high risk letter. Using natural Vitamin E as a blood thinner but do use aspirin too when I feel the need. Due to corn intolerance, Alka Selzer original (aspirin) is my only option for pain relief etc. Any thoughts appreciated.

[Roarah in reply to bookish]

My hematologist has me continuing my low dose aspirin. However, my pediatrician's office sent e notes to all patients advising that children avoid aspirin especially with a fever due to Reye syndrome concerns. I think Reye is still predominantly a pediatric concern.

The NSAIDs concern is observational at this time still. Easy for me to avoid as I am on two blood thinners presently anyway but my husband's doctor said it was still ok occassionally for pain but there is evidence that regular use of Advil can increase stroke and heart attack risks which might be at play with COVID and the clotting issues seen in many severely ill patients.

Does your doctor know you take aspirin regularly? If not you should let them know and maybe they could advise you.

Stay healthy!

[bookish in reply to Roarah]

Hi and thanks for your reply. I don't use the Alka Selzer very often as I have mild reactions even to that (and it is expensive), hence the Vitamin E, and have stopped altogether in the current situation. Doctors do know that I use it when I have to, indeed it was the Rheumatologist who said I had APS that told me to take it, then a second said 'technically I didn't' and said I didn't really need the aspirin. If I end up with the virus I guess I'll have to hope I don't need pain relief. I'll keep taking the quercetin! Best wishes

[Roarah in reply to bookish]

If you get the virus talk to your doctor for fever reduction will be important and they will know your history to do a benefit vs risk assessment specific just for you. But hopefully you can remain virus free. Xo

[bookish in reply to Roarah]

Hopefully we all will, but yes, if needed I'll ask Rheum. Thanks a lot x

[Jmiller623 in reply to bookish]

Continuing my full dose aspirin. Agree with roarah, would worry more in children. There were rumors that NSAIDs made things worse in the very beginning. It hasn’t been brought up again and docs are using ASA, LMWH and DOACs for thrombotic prophylaxis.

[bookish in reply to Jmiller623]

That's interesting and good to hear, thank you. I hadn't seen it raised more recently but could have missed something so helpful to know. Best wishes