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Thread: Surviving COVID-19

  1. #1
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    Default Surviving COVID-19

    Despite my vaccinated status, Delta caught up with me in early August (I thought I could take my child to an amusement park: bad thought). Extreme fever (103.5), weight loss (15 pounds), and overall malaise had me feeling like I was at my end about 3 days into the infection. I called my local Rheumatologist, and the triage nurse informed me that the office does not treat COVID and I need to contact my primary care (I was floored). Anyhow, I thought that a Rheumatology office deals with the most vulnerable of patients (RA, Lupis, Crohns, Vasculitis, etc.), and that they would be at the forefront of COVID treatment for the immunocompromised. I was wrong: door slammed in my face.

    I knew I wanted to pursue monoclonal antibodies (Regenron), but I didn't know how to do it. My Primary Care was clueless as well (but, as always, they did offer me a Z pack: my only comparison is the little boy in "Bad Santa" that kept offering Billy Bob Thornton a sandwich). Then I realized that the only one who was going to save me was, well me. I started at google, which led me to the Health and Human Services website that has a nice database of locations offering monoclonal antibodies for COVID.

    https://protect-public.hhs.gov/pages...s-distribution

    Anyhow, I found a location near me but they said they needed a referral. I knew I had no way to get one so I tried others. I found a hospital near me administering the treatment, but then I called the published number and they were clueless. I finally called an infectious disease doctor that was affiliated with the hospital, front desk had no clue, nurse had no clue, but she did agree to go talk to the doctor who finally confirmed that if I wanted the treatment I could go to the hospital's ER and they would provide it. I took my life in my hands and went to the ER on Friday the 13th (I didn't want to get admitted and intubated: my SPO2 was still at 97%, and intubation = death IMHO), and they agreed to give me the Regenron. For an RTX patient, the 20 minute infusion was a laugher. I was dealing with extreme nausea with my COVID (probably Anxiety), so I threw up a ton, but thankfully with my good SP02, they didn't admit me.

    Long story short, 24 hours after Regenron, my fever was gone. Lights out. Adios. Sayonara. It was in my estimation nothing short of a miracle.

    Anyhow, I was fatigued for at least a week after, still coughing 2 weeks after, and I'm now finally at the point I can walk the dog nightly and swim again. I'm still not 100% (none of us will ever be 100% again), but I'm getting back to a relative normal state.

    Conclusions
    --COVID is real. I don't care your politics (stupid that something like this is political: I truly hate the media). This is very real, and I think it is here for good sadly.
    --I don't know the long term impact of Regenron on my health. I'm here today to write this, so I guess I'll deal with any impacts later.
    --Regenron worked for me. Will it work for you? I don't know. Please in no way take this post as medical advice (I'm not qualified), but I wanted to share my experience with this community.
    --I will continue to social distance, order take out, get curbside pickup, wear a mask indoors anytime I'm not home.
    --Despite the first 2 not working, I will explore a 3rd vaccine dose (my guess is I'll have to go to the Cleveland Clinic to get the lowdown. My confidence in my local care is beyond rock bottom)
    --I will pray (God got people through the centuries and millennia before science, and when science/technology fails and the world returns to its pre-Renaissance/Industrial Revolution state, God will be with us then as well)

    Questions
    --For my fellow COVID survivors, how helpful was your Rheumatologist in your care? I'm hoping you got better care than I received: seriously wondering if I should change my doctor.
    --I've seen another poster (can't remember name) have success with Regenron. Any other monoclonal antibody/Regenron success stories?
    --Anything you'd like to share about your COVID experiences is welcome.
    --If you have questions for me, AMA.

    Prayers to all and please be safe/careful. I just can't believe this is how life is going to be from now on (it feels that way at least to me).

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    Default Re: Surviving COVID-19

    Quote Originally Posted by richard052018 View Post
    ...door slammed in my face.

    ...I'm getting back to a relative normal state.
    Thanks for this well-written and very informative report.
    It's inspiring to read how you organized help in this threatening situation.
    Living with WG/GPA since june 2010...

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    Default Re: Surviving COVID-19

    Quote Originally Posted by richard052018 View Post
    Conclusions
    --COVID is real. I don't care your politics (stupid that something like this is political: I truly hate the media). This is very real, and I think it is here for good sadly.
    --I don't know the long term impact of Regenron on my health. I'm here today to write this, so I guess I'll deal with any impacts later.
    --Regenron worked for me. Will it work for you? I don't know. Please in no way take this post as medical advice (I'm not qualified), but I wanted to share my experience with this community.
    --I will continue to social distance, order take out, get curbside pickup, wear a mask indoors anytime I'm not home.
    --Despite the first 2 not working, I will explore a 3rd vaccine dose (my guess is I'll have to go to the Cleveland Clinic to get the lowdown. My confidence in my local care is beyond rock bottom)
    --I will pray (God got people through the centuries and millennia before science, and when science/technology fails and the world returns to its pre-Renaissance/Industrial Revolution state, God will be with us then as well)

    Questions
    --For my fellow COVID survivors, how helpful was your Rheumatologist in your care? I'm hoping you got better care than I received: seriously wondering if I should change my doctor.
    --I've seen another poster (can't remember name) have success with Regenron. Any other monoclonal antibody/Regenron success stories?
    --Anything you'd like to share about your COVID experiences is welcome.
    --If you have questions for me, AMA.

    Prayers to all and please be safe/careful. I just can't believe this is how life is going to be from now on (it feels that way at least to me).
    Happy to hear you are doing well now.. First off, I did not get any of the vaccinations for multiple reasons. However, I got COVID a few weeks back and my Rheumatologist told me that if I ever thought I had it or tested positive, to call and they would prescribe the Regeneron. I went second day after positive test with fever around 101.5 at the highest at that point and was able to get the antibodies. I had only been using Tylenol and the only reason my fever was being an issue. That night my fever went to 102 and then broke completely around 2am that morning. I like others had residual issues, but began feeling a bit better.

    IMO:
    I'm not sure what area you are in, but I would find a different RA. That is an extremely bad call on their part and could have cost you your life. I'd reconsider the third shot as, from the Regeneron, you have antibodies that will last at least 90 days if not longer. At the point if you get it again, you can get the antibodies again if needed. With our condition and the issues I've seen with others not getting antibodies, I'd be cautious of making your body react to something if a "replacement" is available and you know works.

    Interestingly enough.. I had to have blood work for upcoming Rituxan infusion. My RA and I were nervous about having COVID spiking my panels and causing a set back. My RA called after he got the results and was very happy. Not only did they not go up, but actually one is now showing negative and the other is close.

    God is with us and watching over us... My entire family caught it at the same time, except for my son who had it in December. We had him tested and he still has antibodies from then. My wife was able to get a treatment that has proven to work, she was feeling better within a few days and my daughter had mild symptoms. It was not fun, it is real, but it can be managed if you can find a Dr. willing to treat you appropriately.

    I think everyone in this group should consider asking their RA, whether you decided to vaccinate or not, about the Regeneron in the event you test positive for COVID..
    Last edited by [email protected]$0N; 09-06-2021 at 09:46 PM.

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    Default Re: Surviving COVID-19

    NOVEMBER 10, 2021



    Study investigates factors associated with COVID-19 outcomes in patients with primary systemic vasculitis or polymyalgia rheumatica





    Among patients with primary systemic vasculitis and polymyalgia rheumatica, severe coronavirus disease 2019 (COVID-19) outcomes were associated with variable and largely unmodifiable risk factors, such as age, sex, and number of comorbidities, as well as treatments, including high-dose glucocorticoids, according to a study published in The Lancet Rheumatology.
    “In this analysis of patients with primary systemic vasculitis or polymyalgia rheumatica, including 155 (15.2%) patients who were reported to have died, older age, male sex, a glucocorticoid dose of 10 mg/day or higher, moderate or severe disease activity, and a high number of comorbidities were associated with poor COVID-19 outcomes,” reported Sebastian E Sattui, MD, University of Pittsburgh, Pittsburgh, Pennsylvania, and colleagues. “Risk factors for poor outcomes were older age and obesity in patients with giant cell arteritis; older age, moderate, or high or severe disease activity, and rituximab or cyclophosphamide use in patients with ANCA-associated vasculitis; and older age in patients with polymyalgia rheumatica.”
    The retrospective cohort study included 1,202 adult patients (mean age, 63.8 years; 61.0% were female) diagnosed with COVID-19 between March 12, 2020 and April 12, 2021 who had a history of primary systemic vasculitis or polymyalgia rheumatica and were reported to the COVID-19 Global Rheumatology Alliance registry. A total of 374 (31.1%) patients had polymyalgia rheumatica, 353 (29.4%) patients had ANCA-associated vasculitis, 183 (15.2%) patients had giant cell arteritis, 112 (9.3%) patients had Behçet's syndrome, and 180 (15.0%) patients had other vasculitis.
    The most common comorbidities were hypertension (564 [46.9%]), cardiovascular disease (222 [18.5%]), diabetes (216 [18.0%]), lung disease (212 [17.6%]), and chronic kidney disease (160 [13.3%]). Most patients were in remission (442 [36.8%]) or had low disease activity (370 [30.8%]) at the time of COVID-19 diagnosis. A total of 752 (62.6%) patients were taking glucocorticoids and 631 (52.5%) patients were taking disease-modifying anti-rheumatic drugs (DMARDs).
    Of the 1,020 (84.9%) patients with outcome data, 114 (11.2%) were hospitalised and did not receive supplemental oxygen, 239 (23.4%) were hospitalised and received ventilation or supplemental oxygen, and 155 (15.2%) died.
    Ordinal regression model that included all disease types showed that patients had higher odds of worse COVID-19 outcomes if they were older (per each additional decade of life odds ratio [OR] 1.44 [95% CI 1.31–1.57], P < 0.001), male compared with female (1.38 [1.05–1.80], P = 0.020), had a greater number of comorbidities (per each additional comorbidity 1.39 [1.23–1.58], P < 0.001), were taking 10 mg/day or more of prednisolone compared with none (2.14 [1.50–3.04], P < 0.001), or had moderate, high or severe disease activity compared with disease remission (2.12 [1.49–3.02], P < 0.001).
    On the other hand, the researchers observed that risk factors varied among different disease subtypes. Among patients with giant cell arteritis, multivariable ordinal regression model demonstrated that factors associated with a higher odds of worse COVID-19 outcomes included older age (per each additional decade of life OR 1.89 [95% CI 1.27–2.83], P = 0.0019) and obesity compared with non-obesity (2.98 [1.18–7.55], P = 0.021), whereas risk factors among patients with ANCA-associated vasculitis included older age (per each additional decade of age OR 1.60 [95% CI 1.33–1.91], P < 0.001), rituximab use compared with no DMARD use (2.15 [1.15–4.01], P = 0.016), cyclophosphamide use compared with no DMARD use (4.30 [1.10–16.75], P = 0.036), and moderate, or high or severe disease activity compared with low disease activity (2.16 [1.01–4.31], P = 0.028). Meanwhile, older age (per each additional decade of life OR 2.75 [95% CI 2.00–3.80, P < 0.001) was the only factor associated with higher odds of worse COVID-19 outcomes among patients with polymyalgia rheumatica.
    As for the remaining subgroups, the authors noted that patients with Behçet’s syndrome were not included in the regression analysis due to a low number of events, whereas patients with other types of vasculitis were not included “given the smaller sample size, reduced diversity of diagnoses, and absence of information on specific diagnoses.”
    “To our knowledge, we report the largest study to date of COVID-19 outcomes in patients with primary systemic vasculitis or polymyalgia rheumatica,” the authors wrote. “Different risk factors, including particular treatments and increased disease activity, were associated with poor COVID-19 outcomes in patients with primary systemic vasculitis or polymyalgia rheumatica. The identified risk factors could help to guide physicians in recommending mitigation strategies for their patients,” the authors added.
    “Further studies should address the reasons for these concerning outcomes in patients with primary systemic vasculitis who develop COVID-19,” the authors remarked.




    Reference: https://www.thelancet.com/journals/l...316-7/fulltext



    SOURCE: The Lancet Rheumatology


    Knowledge is power! Wisdom is using it to make good decisions!

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