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  • James

    Member
    March 28, 2023 at 2:17 pm

    I have IPF and was stuck for the COVID twice since 2020 booster 2022 and tested positive two weeks ago, no symptoms though.

  • Stephen B. Strum, MD

    Member
    March 28, 2023 at 3:43 pm

    I am surprised that those with IPF or any significant lung disease are not fully vaccinated (x 2), been boostered x 2 with the monovalent vaccine and also received at least one booster with the bivalent vaccine (Moderna or Pfizer).  As a MD very much involved with SARS back in 2003 and now with SARS-CoV-2 in 2019, I think our medical institutions (gov’t and private) have done a poor job to educate the lay public.  James, we are both ex-military.  When you tested positive for COVID-19 2 weeks ago your local MD should have offered you Paxlovid®.  Although the omicron variant of concern (VOC) is not as lethal as prior VOCs, it is still hospitalizing and killing people who are compromised by various illnesses.  I am 80 years of age, still practicing medicine, have a rare blood malignancy called light chain amyloidosis (AL), plus cardiac and renal disease.  I have had a total of 5 vaccinations with the last 4+ months ago with the bivalent booster.  I have not had COVID-19 but many of my patients who are elderly and with cancer have not been fully vaccinated and boostered and have had COVID-19.

    I have advised from 2020 to the present time to obtain lab testing for humoral antibody levels (HALs) related to the spike Ab (antibody) of SARS-CoV-2.  My level is 14,212 U/ml at 4 months passed my last booster.  A patient and medical colleague who is also my age and with treated prostate cancer in complete remission (CR) only received 2 vaccinations + one monovalent booster.  He has had COVID-19 and when he checked his spike Ab level it was only 84 U/ml.  He is now going for the bivalent booster with plans to check his spike Ab after 1 month and pending the result keep checking it to determine when he needs another booster.

    I have based the above advice based on reading of the peer-reviewed literature and specifically on the Gilbert 2021 and 2022 publication:

    Gilbert✸✸✸✸ PB, Montefiori DC, McDermott AB, et al: Immune correlates analysis of the mRNA-1273 COVID-19 vaccine efficacy clinical trial. Science 375:43-50, 2022.

    I have also stayed in touch with infectious disease (ID) experts at U of Washington who advise that using the humoral antibody levels as surrogates for virus-neutralizing antibodies (nAbs) is reasonable.  The humoral antibody level (HAL) is commercially available:

    LabCorp test code 164090: SARS-CoV-2 Semi-Quantitative Total Antibody, Spike using Roche Elecsys.

    If you are not sure you have had COVID-19 you can also do:

    LabCorp test code 164068: SARS-CoV-2 Ab, Nucleocapsid

    The above is not influenced by vaccinations and if positive means you have had COVID-19 in the past.

    Stephen

     

  • Rhonda Kramer

    Member
    March 30, 2023 at 8:02 pm

    I have IPF and received two vaccinations and one booster. My Dr., my Pulmonologist, my Pharmacist ALL recommended both vaccines and the booster. Every one of them.

    I did get Covid in November 2022; I went to the one place you cannot wear a mask-the dentist. Anyway, not placing blame here, just sharing my experience.

    I got mighty sick with Covid. I went to the ER, and was pretty much floored when the ER Physicians Assistant asked if I wanted to be hospitalized, or did I just want to go home and, as he put it, feel miserable for a few days. I’m sitting there with my oxygen on ( I am on oxygen 24/7 and have been for 10 years). I told him I chose to be hospitalized, and I’m so glad I did. I still cannot believe an ER doc would tell someone with lung disease that they could just go home and wait it out. I had Covid 19 and pneumonia.  All of this makes me worry for older patients who cannot make good choices on their own. Next time I need ER, I guess I’ll have to go out of town. I have great faith in my primary care provider and my pulmonologist, and in the hospital staff here. But I have very little faith in the ER here. I did write to the hospital board and tell them of my experience with the ER, hopefully this was fully addressed so an oxygen patient who may not be able to make the best decisions on their own would not think “ok, I can go home with Covid pneumonia and I’ll be fine in a few days.”

     

  • Donna

    Member
    March 30, 2023 at 8:42 pm

    I have had COVID twice the first was really bad when hey were first doing shots. Last year I caught it from my Husband as hard as we tried with precautions. At the time I was so sick with Pneumonia and very Anemic so my resistance so low. With Plaxovid I got over COVID quickly not the Pneumonia.
    I have had the Flu Shot, Pneumonia Shot and all COVID Shots and Boosters and still caught it. I have had IPZf for now 6 yrs at that time was still considered Early Stage going thru all that caused more lung damage. M next CT showed the change. I was scared for the first time really. I found a new Pulmonary Dr. that does know what he is doing with my last one really didn’t.

  • Kim Morrison

    Member
    April 4, 2023 at 2:10 pm

    I have PF and got the maderna vaccine
    I tested positive for Covid several months later. I only took the test bc I was going to see my grand baby. I only had a runny nose for about 4 days I felt fine other than annoyed from the runny nose.

  • Bonnie Welch

    Member
    April 5, 2023 at 8:33 am

    Hi,

    I have IPF. I am currently on Ofev and being evaluated for a transplant. I’m not on any IV therapy and, as yet, do not require 24/7 O2. I have had 2 Moderna vaccines and 2 Moderna multiclonal vaccines.

    I did test positive for COVID. I immediately went on Paxlovid. I honestly have had worse colds. Slight sore throat, no increase in cough from IPF dry cough, and sniffles. Even the fatigue didn’t seem greater than what I am used to.

     

    maybe I was lucky.

  • Stephen B. Strum, MD

    Member
    April 5, 2023 at 8:35 am

    Regarding vaccination and IPF, each person must be evaluated based on that individual’s biologic landscape (IBL).  I can speak to this issue from the standard of those severely immunocompromised and for those with multiple co-morbidities who are at the greatest risk of hospitalization and/or death.

    You can obtain a sense of your risk of COVID-19 and its outcome taking into account whether or not you have

    Any form of cancer; are on immunosuppressant drugs; lead a lifestyle associated with immunosuppression such as alcoholism; or have co-morbidities that include being elderly (>65), obese (a BMI of > 25 and even more so if ≥ 30 and still greater if morbid obesity is present with a BMI (body mass index) of >35; are hypertensive, have heart disease, kidney disease or lung disease.

    Early in 2020 on another forum (Smart Patients) dealing with fellow immunosuppressed patients like myself (elderly, heart and kidney disease, a B-cell malignancy, on chemo) I advocated to all (based on the peer-reviewed literature) testing for SARS-CoV-2 spike Ab (antibody) levels.  Studies by multiple institutions with publications like those of Gilbert et al:

    Gilbert✸✸✸✸ PB, Montefiori DC, McDermott AB, et al: Immune correlates analysis of the mRNA-1273 COVID-19 vaccine efficacy clinical trial. Science 375:43-50, 2022.

    showed that a spike Ab level of ≈ 3,000 U/ml related to a negligible risk of COVID-19. I am used to being able to drag and drop an image file into a forum. I am not sure how to do this here on this forum.  The best I can do now is to share a link to the reference in Science:

    https://www.science.org/doi/pdf/10.1126/science.abm3425

    My spike Ab (antibody) level was initial quite low, moved up after the first two vaccinations and then dropped low and required two boosters and after dropping lower once again in Nov 22, I received the bivalent booster.  My antibody testing against the nucleocapsid (NC) Ab (antibody) shows I have never had natural COVID-19 infection.  Four months after my bivalent booster, my spike Ab level was 12,212 U/ml.

    Some of my patients with cancer + being old and having heart disease refused all vaccinations. Two of them have had COVID-19. In both, the spike Ab levels just obtained were < 100 U/ml.  This test is done by LabCorp and for Medicare patients has been at no charge:

    LabCorp test code 164090: SARS-CoV-2 Semi-Quantitative Total Antibody, Spike using Roche Elecsys.

    Your individual pulmonologist must be the one advising you on your need or no need for COVID-19 vaccinations and boosters.  Feel free to share this post with him or her and know that I will be happy to exchange information with any MD, DO or Naturopath on this subject.  Since Jan 2020, I have retrieved close to 7,000 articles on COVID-19 and have read a ton of them.

     

     

     

     

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