Sadly no protection for us being on hydroxychloroquine it seems. Also the hospitalisation figures (55 - 57%) were horribly high in this, but I'm reminding myself that these cases are physician reported - presumably hospital physicians - so we maybe aren't hearing of all the community infections. Also numbers are small in this study. The early modelling of hospitalisation rates for various risk factors that I thought were relevant to me suggested a hospitalisation rate in the 30s percentage wise, if I remember correctly, so at this stage I refuse to accept this higher rate is accurate, as it's not a reliable collection/population of infected SLE patients. I'm going to delve into the full text and see what more I can glean.
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I read this report last night and I agree with you, the numbers are too small to give an accurate percentage. Have you read the report from rheumatology alliance who are collecting data and are going to publish a paper soon with a more in depth analysis?
Hi Josiah. Is it this one? thelancet.com/pdfs/journals... Yes I read it but again thought the numbers (110) were too small at this stage to make anything of all the breakdown in symptoms and risk factors and spread of rheumatological diagnoses. They do point out that the data may be skewed to serious cases and miss the asymptomatic and mild ones I see.
No, it is Global Rheumatology Alliance, a collection of different organisations around the world to help collect data. . rheum-Covid.org. You will also find them on Twitter. And yes, I agree you cannot rely on the early data.
Thanks Josiah. I believe the lancet article is by the rheum-Covid.org people. Certainly it’s using their data, best I could see and was the latest findings they linked to on their website.
An N of 80 is a pretty good number and maybe I have confirmation bias but the percentages they throw out would be what I would expect. You technically only need an N of 20 for a study to render statistically significant outcomes.
I think the study is as sound as you’re going to get with regard to SLE COVID positive patients on HCQ before getting sick. That’s a hard population to find right now and they have to follow for the length of time needed to make all patients comparable. Many drop out of surveys before they finish.
Well that’s sobering, but helpful Jmiller. Really helpful to hear your thoughts. And yours Josiah. I’m glad I’m not the only one who’s been obsessing about this for months, waiting for figures.
Jmiller - any thoughts on the percentage of Lupus patients that required hospitalization? I really don't know how to read these so I can't tell if the numbers that were presented in this survey were significant. I guess - do those with Lupus and/or APS have more risk of serious outcome based on these results only? Just curious if you can share your thoughts on what they are saying. It could be that this is a bubble and within the bubble of people they had more risk but not necessarily overall with everyone else.
Great question TwoH! This paper doesn’t address this question so you’re one step ahead of most 😉. There is great data on the COVID Global Rheum Alliance website. They have a survey of 777 patients that were entered by providers. For all comers (RA, SLE, PsA etc), 45% were hospitalized and 8.75% have died. There are so many confounding factors that I couldn’t tell you what put those at risk that perished. Some could’ve been highly immunosuppressed, had poorly controlled CTD or diabetes. It’s hard to compare our population with the general population because at baseline we are different in so many ways. But mortality does seem to be a bit higher in rheum population when compared to general public which has a mortality rate of 1-5% depending on who you ask and how optimistic they are. 😊 I can’t comment on hospitalization rate in detail but by pure guessing, the rate of rheum pt hospitalization at 45% is higher than general population but it might also be from cautious providers who are admitting patients because they have CTD and are high risk.
Thank you! I have been very interested in the dynamics of this virus and how so much of it seems to mimic our various symptoms. Neurological, clotting, immune reaction etc...That may be normal to any number of viruses but reading the symptoms feels like reading our posts here, just more catastrophic I guess. I always appreciate your insight!
100% agree. About a month ago, I had really bad tightness in my chest, trouble breathing, flared quite badly for about 2 weeks with hard to control heart rate and huge lymph nodes. Steroid pak didn’t help. Definitely has me wondering if I had COVID. Only time will tell. Everyone at some point will need COVID PCR, IgG and IgM testing to clarify if we are, have been or haven’t been infected.
It would be nice if it was and you were done! We experience so many strange things that it may be hard to tell until a good solid test is available that we all feel comfortable with. I do believe one positive out of this is that it may lead to more understanding about autoimmune and clotting diseases - maybe the desire to solve this will lead to better treatments overall. Fingers crossed!
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