Wondering what the PAP community is thinking about COVID vaccine(s)? Are PAP patients generally considered to be immune-compromised? If so, is the Pfizer vaccine okay - safe for PAP patients? I'm hearing it has not been tested on immune-compromised subjects. What about the Moderna vaccine?
Great questions! Yes, aPAP is by definition an autoimmune disorder that impacts the lungs, so we are indeed immunocompromised. We do not have any specific information on the interaction of either vaccine and aPAP, but will follow-up with more information and/or thoughts as such are formed and become available. NOTE that there is an Allergy warning for the Pfizer/BioNTech vaccine after UK health workers with allergy history suffered reactions. https://www.cnn.com/2020/12/09/health/covid-vaccine-allergies-health-workers-uk-intl-gbr/index.html
Thank you for looking into this for us. I am sure were all concerned. Thanks again for all your help
This from Twitter: Dr. Abdu Sharkawy - doctor and an infectious disease specialist at the University of Toronto in Canada.
Another important point is that most front-runner vaccines so far (Pfizer, Moderna, AZ, J&J) are all "killed vaccines" (no live virus) just like flu, Pneumonia & Shingrix. All of these are effective & safe in patients with autoimmune disease! 10/
Yesterday I went to my lung professor. The vacin is no danger to us. the chance of an allergic reaction is extremely small. The chance of a car accident is much higher and yet everyone drives it. After the vaccination you still have to be careful. But if you still got it, you would be less ill.
An interesting podcast about COVID vaccine:
Takeaways:
- may not be "unsafe" for immune compromised - not enough testing or data so far.
- immune compromised recipients may have a muted immune response compared to others
- discuss benefits vs. risk with own healthcare team
Hello everyone and I hope your staying well. I am understanding that Leukine is an immune booster medication, so my question is how or did anyone look into the interaction with Leukine and the blue print of the virus, how does it know what to go after since we are trying to boost our immunity . Is it just overkill with the Leukine in our systems and we will have a better chance to beat the virus once we are given the vaccine?
Gigi -- there are clinical trials with GM-CSF (Leukine) and its direct use as a therapy against COVID-19. I do not believe there has been any materially positive results, nor has there been a direct investigation of GM-CSF + vaccine. But the theory is intriguing. https://clinicaltrials.gov/ct2/show/NCT04411680?intr=gm-csf&draw=3&rank=16
@Chris Hameetman Thank you Chris, I also have found an interesting few websites that had some information, www.jpeocbrnd.osd.mil/coronavirus, and Cision pr newswire web page, Looks like the government still has the stock pile for Leukine in case of an emergency. Also it looks like they are looking into using Leukine for lung health associated with the corona virus. Lets hope this virus is only a dream next year and not reality.
Thank you for getting back to me. Stay safe and thanks for all you do .
Thank you everyone for your comments and engagement! For those with PAP, if you feel comfortable we welcome open sharing of your experience with the vaccine (also provide details such as Pfizer, Moderna, etc. vaccine). I will do the same if and when I am lucky enough to have it become an option for me. It is also helpful to note that although aPAP is by definition an autoimmune disorder, it results in an overactive immune system (overproduction of anti-GMCSF antibodies) as compared to a condition that creates an immune system suppression or deficiency.
Hello everyone, I just got back from the Mayo in phoenix and my results are not too good, it seems that Leukine is not working at keeping my pap under control, and after my last lavage they took out 28 liters of fluid. Chris, do you have any experience with injecting Leukine or even an IV drip with Rituxain? These are being discussed with my team of doctors. Also, do you know if the Sarva trial is back on?. Thank you
@Gigi I am so sorry to hear things are not going well. Feel free to email me directly with any answers (chrish@papfoundation.org) but I am curious about your Leukine dosage (250ug/day? 500ug/day?) and frequency (every day, 1 week on / one week off, etc.) Savara's trials are ramping back up and should be enrolling soon. We will have this information on our website as soon as it is available. As to injected Leukine, our doctors can speak better to this, but my optics are that inhaled is generally more effective. As to Rituxain, that is a serious business and our doctors have used this on aPAP patients, but I would defer to them entirely on the details.
I've been living with PAP for around ten years now. Had the 1st Moderna vaccine a week ago. Only symptom for me was a sore arm for two days. I was skeptical about getting the vaccine but my pulmonologist at Cleveland Clinic highly advised getting the vaccine.
Thank you Richard for sharing the information on the vaccine. Were still waiting to get enough vaccine in Las Vegas, NV so we can get ours.
Had the 2nd Moderna vaccine four days ago. Only symptoms were slight headache and feeling tired the day after. Although I'm sure symptoms may vary with others. Thought I'd give my account of the Moderna vaccine for anyone looking for examples.
I have PAP and received my first dose of Moderna vaccine a few days ago. No problems other than a sore arm and no interactions with my leukine that I have noticed. I have not had any problems with flu shots or shingrix vaccine either. Will update after the second dose.
I just was able to book my 1st dose of moderna for next week!! Iβm pretty excited! My Respirologist feels very strongly the rewards outweigh the risks. Iβm also currently receiving rituximab infusions every 9 months, so one issue is making sure that there are approx 4 weeks between the vaccine and my next infusion which is due in May. Happy to update if there are any issues. π