Lupus patients less likely to get COVID 19

[miccika1]

It appears we are less likely to get COVID 19 due to taking hydroxychloroquine. Read here in the middle of the article. wsj.com/articles/an-update-...

[Hidden]

So I have been constantly wondering about those of us not taking hydroxychloroquine or any Rx. Those of us trying to go it with homeopathic means?

Will our AI stave off the CV from being as bad as it could be?

If our AI has reason to fight a Covid19 attack, do we then have a major flare?

Just a couple of questions that have been on my mind if anyone knows the answer. Thanks.

[miccika1]

Here is the copy of the relevant part as i see some cannot access the link if no subscription to wall street journal: "Clinical information has also emerged from Covid treatment. During the initial Chinese outbreak, Wuhan doctors observed that patients with lupus—a disease for which HC is a common treatment—did not seem to develop Covid-19. Of 178 hospital patients who tested positive, none had lupus and none were on HC. None of this Wuhan hospital’s dermatology department’s 80 lupus patients were infected with the novel coronavirus. The Wuhan doctors hypothesized that this may be due to long-term use of HC."

[Hidden in reply to miccika1]

Does that mean my goose would be cooked if I stepped outside 😁? Seriously, would my AI fight it off, but then cause a major flare?

[Jmiller623 in reply to Hidden]

To be honest, I don’t believe the HCQ hype. There is NO concrete data justifying its use. I am hoping docs aren’t doing more harm than good. I don’t care what anyone says. I have reviewed the data. No study has convinced me that it definitely works. And the one study being used to prop up its use is written by a guy who also happens to be on its board for peer review. Huge conflict of interest. He basically can push through any studies he wants. Its a red flag to anyone who works in science and publishes regularly.

I think AID pts are super self isolators. I think we’re not seeing infections in them because we are self hermits prior to corona and now we’re super hermits. People need to realize that numbers being reported do not take into confounding principles and bias.

[Hidden in reply to Jmiller623]

Thank you for your reply.

I think so much of the information out there is misleading. 🤦🏻‍♀️ I’ve been keeping an eye on the New York Post and their constant data charts do not align with what others are saying is going on in their countries. Plus, they stress cases over death rates, and I feel that should be the other way around.

It’s such a confusing world when so many have their own agenda and simply want to manipulate our understanding. Not good.

[Jmiller623 in reply to Hidden]

Hate to say it but doctors are not trained to break down studies. In some ways, they are like sheep and believe whatever comes out of the news. There’s been plenty of discussion on physician only forums. I am appalled at how readily doctors believe reports not based on data. Some of the things they’ve said have me floored. Like using complete untrue claims to justify their decisions. Even when you break down the data for them, they hand wave and say they still believe it anyways. It’s a HUGE blind spot to not look at things objectively.

[miccika1 in reply to Jmiller623]

Completely understand. When you look at published research over 70 prct proved false and not using proper statistics but just confirming biases. That's why I want to see the breakdown of a large number of people using HQ compared to the rest of society... HQ does have antiviral properties and it's a candidate for covid, but no good enough data to support it yet although I think the data readily exists just if they look at the large number of existing HQ users

[Hidden in reply to Jmiller623]

Ugh!!! Yes!

I love my GP. He’s very sensible and listens and internalizes what you discuss with him, instead of having the attitude ‘I am the doctor, therefore, do not question me!’ I’ve had a few of those, but they weren’t my doctors long.

My new rheumatologist isn’t familiar enough to me yet. I think she’s good🤷🏻‍♀️, I did decide to switch to a alternative program when her office couldn’t really give me any more alternatives then I was already doing? I haven’t ‘stopped’ going to her, just put things on pause while I go this other route. So far so good.

Then I’ll go back and see if labs look better. She does have a homeopathic NP in her office, but not really 100% homeopathic. But they are at least trying to give other options.

[Jmiller623 in reply to Hidden]

Only problem being that HCQ is the ONLY treatment proven to reduce lupus flares. I cannot stress this enough. No other treatment has been shown to do the same thing. It’s the only reason why I’m so protective of our right to this medication. It took me forever to build up a tolerance and I’ve tried stopping it. It landed me in the ER 3 times in 2 months. I imagine there are tons of folks like me who don’t consider it an option to stop.

I’m glad alternative pathways have kept things under control for you. I just know that it’s not an option for me. ☹️

[Hidden in reply to Jmiller623]

Oh yes, each of us has our own solution. I’m not judging anyone. And yes, so far so good, but who knows what tomorrow might bring. I may end up back on meds. Who knows?

A friend with lupus (I only have latent lupus, which also may be making the difference in methods) was using methotrexate and switched to Benlystra (I think I may have not spelled them correctly?) And I envied the thought of only being out of it on a planned half day (she self injects Monday’s at 4 pm and sleeps through until Tuesday morning) and having the rest of my week dependable. I think, however, she’s still having on and off problems.

Would be so nice to have a magic wand to wave, but that’s not really going to happen.

[Jmiller623 in reply to Hidden]

Even MTX and benlysta don’t prevent flares. They do help manage life threatening sequela from lupus - nephritis, CNS demyelination/attacks and some arthritis. MTX/Benlysta are pretty strong when compared to HCQ. MTX is a particularly nasty drug for some. The best part about HCQ is it’s mild side effect profile and repeated data showing that it reduces flares and hospital admissions.

No judgment at all. We all have our own journey. It’s the like a big life fingerprint. None of us are exactly the same.

[Hidden in reply to Jmiller623]

Exactly! I agree 100%!

[overnighthearingloss in reply to Jmiller623]

Some of the things I have read suggest that it helps the body to absorb zinc and that it's zinc that is the magic bullet.

[miccika1 in reply to Jmiller623]

Agree with the thinking, however I would really like to see more data on the covid infections for people on HQ. If none of millions of people developed covid that would be a definite finding. Or at least highly significant number of people not developing covid while on HQ. Unless I see that it could be one way or another

[Jmiller623 in reply to miccika1]

Best way to do this is to test everyone on chronic HCQ for Coronavirus antibodies. It’ll have to be done once this wave of infections washes over. If infected, you should have seroconverted with IgG which we can test for. If you find a lot of ppl positive on HCQ and had no symptoms, I’ll bite. That’s real. I’m interested in this data too but my guess is that ppl on chronic HCQ are under lock and key right now.

[miccika1 in reply to Jmiller623]

Yup that would work too

[WinterSwimmer in reply to miccika1]

178 patients is not many from which to extrapolate a global conclusion, surely?

[Bebe76 in reply to WinterSwimmer]

Definitely not! And why only look at 178 patients out of the thousands and thousands in China who had the virus? Not very scientific.

[Paul_Howard Partner LUPUS UK in reply to miccika1]

Hi miccika1 ,

Sorry but this is bad science. People with lupus can and do contract coronavirus whether they are taking hydroxychloroquine or not. The COVID-19 Global Rheumatology Alliance is a global registry logging cases - you can read about their validated cases so far at twitter.com/rheum_covid/sta...

[miccika1 in reply to Paul_Howard]

Thank you Paul. Good to know. Unfortunately major newspapers are not sharing this great data.

[Jmiller623 in reply to Paul_Howard]

Thank you for this resource Paul!

[Roarah]

In one HCQ small study the placebo had equal positive end results as those treated with it. In another French study the end results were worse for those on the drug than those not. It is still far to early to assume this is a COVID19 cure or has preventative value.

[Jmiller623 in reply to Roarah]

This guy Didier Raoult (French scientist I also mention above) been trying to use chloroquine in every viral disease know to man for years. Jumped on that China HCQ bandwagon and drove it right into the US. Peer pressure sucks. Docs feel bad if they don’t use it. Damn shame.

[TwoH in reply to Jmiller623]

I find it confusing that we know from experience that at the level we take this drug that it takes time to build up in our system. Why would this be such an instant cure? Also, it seems that this virus eventually runs its course and if it’s going to go well, it does and if not, it doesn’t.

I am frightened by this and to know we are all protected would be beautiful but I just don’t buy it. Otherwise I really think we would have seen a major decline in deaths.

[KayHimm in reply to TwoH]

I thought about that too. But I read it seemed to lower the viral load. So maybe there other properties that could help with infection. It was originally an anti-malarial drug.

[Jmiller623 in reply to TwoH]

Preach. I’m with you.

[Jmiller623]

Let us also not forget that South Korea has some how plateaued its infection rate and quelled mortality without having to shut everything down. And this wasn’t due to judicious prophylactic HCQ use. It was due to quick action of mass testing and immediately quarantining the infected. Hard to do in massive countries but should be seen as a valuable lesson that isolation, not pretreatment is what saves lives.

[KayHimm in reply to Jmiller623]

Sound like wise words.