-
Vaccinated PF people and COVID 19
Hi, I’m curious to know if there’s anyone out there with PF that has been vaccinated and has contracted COVID 19. How did you feel? Was it terrible? Did being vaccinated make a difference on the outcome?
-
67 Replies
-
My husband tested positive yesterday so we are trying to isolate ourselves from each other as best we can. I am getting the monoclonal infusion today as a precautionary measure. So, I can’t answer your question, but if I get COVID I’ll send an update.
-
Sorry to hear that Marisa, please do keep us posted. Sending well wishes for both of you. It must be hard to stay apart right now.
Denise, I don’t know anyone who quite fits that description but I do have a friend whose parents both got covid a few weeks ago. Her mother was otherwise healthy, and unvaccinated, and she passed away last week. Her father, who has COPD and diabetes, was vaccinated and is still alive. He’s in the hospital, and not on a ventilator… If that isn’t evidence of vaccine effectiveness I don’t know what is. Extremely painful for everyone involved of course, including the medical team. PF and COPD do have things in common so maybe that is a helpful anecdote, though the use of immune-suppressing medications may change outcomes with vaccine effectiveness. I’m not a doctor, just my conjecture.
-
Ihad the maderna vaccine back in February. Tested positive for COVID yesterday and getting the infusion IV right now. My symptoms have been slight runny nose, low energy, and mild congestion. No headache, normal temperature. Diagnosed with IPF 4 years ago. Not on oxygen yet.
-
Hi Bob, sorry to hear that you have contracted COVID! What kind of infusion are you getting? Hope you get well soon!
-
Are you referring to monoclonal anti-bodies infusion?
-
-
I have had all my COVID Shots and Booster
My Husband caught COVID even though we tried to take precautions living in same home I caught it. I had Pneumonia at the time plus underlying Asthma. Dr. Prescribed Antibiotics and Plaxovid.
After 2 months still coughing a lot after 3 rounds Antibiotics cough still not gone. I was not coughing before it started. So tough kicking things for me.
Have not started PF meds yet it is in the works see Pulmonary Dr. in December will know then.
My second time with COVID this time taking Plaxovid not as bad as first time so thankful.
-
-
Thanks Marisa! Sorry to hear about your husband! What is a monoclonal infusion and what does that do for you?
-
Sorry to hear about your friends mom! That is so sad! However, the information for the dad helps. You hear people say that if you’re vaccinated you won’t die – you’ll just get sick. I’m glad to hear that her dad has made it through even though he has COPD. It gives me hope. I’ve been vaccinated but I’m doing Rituxan infusions for my RA so my immune system is really suppressed. The delta variant that is going around is making me panic again about being social even though I’ve been vaccinated. So thanks for easing my mind a little bit.
-
I watch what is going on in Israel, they made a deal with Pfizer to share all their data, seems the immunity wears off at about 5 months so I got a booster, easy to do, just go to a drug store and answer some questions and they give you the booster. I got real sick last month and thought I had covid but it was a upper raspatory infection and after recovery I was motivated to get the booster. Our government is great but they are waiting to see the data? That apparently means people get sick and die and then the cdc will recommend the booster. I did not want to role the dice.
-
Hi
John I agree with what you’ve said. If you have had two vaccines (especially 6+ months ago), never had Covid, and are on anti-fibrotic meds you likely would benefit from a third injection. I’m told they are not calling it a “booster” but part of a 3-shot regimen. I am concerned our antibody levels are lower due to immunocompromise but everyone is different. CVS will give you the 3rd shot as you are considered immunocompromised on antifibrotic meds. Not trying to play doctor here. If you had Covid along the way (along with two vaccines) you likely have a higher antibody level. There are a small number of people vaccinated (rare) who can get sick and die. I just read the Moderna gives higher antibody levels than Pfizer but they both are a blessing. It is still advised that if you get a 3rd shot it should be the same as the two you’ve already received.
Doctor Don
-
Hi Donald:
What do you mean by immunocompromised? I am on Ofev. Does that make me immunocompromised? Does that make my immune system weaker. Please advise.
-
-
Based on the questions asked at dispensing pharmacies, is IPF that form of life threatening illness giving us qualification for the booster. The questions I saw did not relate to IPF
-
My Hematologist is testing me to see if I am immunocompromised since I struggle so much to get over anything I catch. So far my One of my Ig counts are low and I think for insurance purposes she will have to repeat before an Infusion. She said if I get the Infusion I would feel so great.
I had to get 2 Iron Infusions that is how I ended up with a Hematologist.
-
-
I was told by a variety of pharmacies that having IPF (untreated) does NOT qualify for a third vaccine. If one is on OFEV or Esbriet(or other therapy)—then you are considered immunocompromised and eligible for a third shot. I’m not sure if this is 110% accurate but I am definitely going for #3!!!
-
I argued with my pharmacist. I am on OFEV and pointed to language in the accompanying drug literature that says OFEV affects the immune system. Pharmacist said that was good enough for him. I know lots of people, who just went and got one no questions asked. Have heard of lots of people lying and getting one as well. Seems that the booster shot debate has become somewhat politicized. I strongly suspect that the back and forth from booster at 8 months to booster at 6 months and back (with not enough science to warrant boosters thrown in between) was based more on politics than science. My guess that the CDC internal debate went something like this, 8 months we need a booster for sure, but 6 months is even better, but the US has pledged to vaccinate the world, so to save on vaccines, let’s push it back to 8, 8 is good enough. I told my pulmonologist that I got the booster and his response was GOOD!
None of us want to be able to answer the question first posed. I don’t want to hear of any more of you being able to answer the question. Best way to avoid having the capability of answering the question is to get the booster shot asap, rather than wait for CDC to say oh yeah, IPF qualifies, sorry about that. Wish all of you the best of luck.
P.S. I am NOT a Dr., this is a layman’s opinion, so please consult your medical professional.
-
Got a booster at Walmart Aug 31 after I said we were regularly on Prednisone. It was a full dose of Moderna
Bill
-
-
-
Thanks for the info….I am not sure that across the country there is uniformity as the CDC guidelines do not include IPF
-
Also, you qualify if you are on CellCept. I am, and just received my booster 4 days ago. Be alerted to the fact that auto-immune medications will reduce the efficacy of the vaccines, so consult with your pulmonologist. I am off CellCept for 7 days after the injection. I was also advise to pause 3 days before, though I don’t find that recommendation in the literature.
-
I just received my booster this pass Saturday, the day after it was approved. I read that an interstitial lung disease and pulmonary hypertension are qualifying diseases, of which I have both. I’m 64 and had no issues at all, I told them what I have and they gave me the vaccine. It was just a walk in clinic, not my Drs office. I’m so glad!
-
You are definitely correct.
A 100yards and 2 minutes from Walmart, Sam’s Club where I got my 1st 2 shots, refused me a booster.
So don’t give up if you need it.
-
-
Frank:
Its likely a moot point as most people will be eligible for a booster soon anyway if you’ve had the second vaccine 6+ months ago.
Don
-
What are the ages of the deceased and the survivor?
-
I was able to get a 3rd vaccine shot even though I am not on anti-fibrotic meds. A local grocery store (Vons, Albertsons) was giving 3rd shots to people that qualify. I went online and filled out their form. For the question about how you qualify, I checked the box that I am immunology compromised, and in the box that popped up asking about your condition, I put Idiopathic Pulmonary Fibrosis. It allowed me to make the appointment, no further questions asked when I showed up for the shot, and got my vaccine. Two more days until my 2 weeks and I’ll feel relatively safe again.
Judy
-
Has anyone gotten an antibody test before getting a third shot? I’m concerned that there’s not yet been enough time to study any possible dangers from getting a third shot when we still have a high level of antibodies. I read one report of a small study (can’t find it now) of heart myocarditis seemingly resulting from a third shut not needed. My husband’s transplant team ordered an antibody test that wee waiting the result of.
-
I am confused. I asked my specialty pharmacy if being on Ofev meant I was immunosuppressed and the pharmacist said no that Ofev does not make me immunosuppressed. Yet all of you seem to think we are. Did anyone else ask their pharmacy?
-
Jill & Cindy:
In the questionnaire to qualify for a third vaccine—you qualify if you have a chronic disease (which of course we do). Whether you are on meds or not—you can have the third shot. I stand corrected on this. Not all chronic diseases suppress the immune system. Many do especially the meds that treat these diseases.
As for OFEV and Esbriet—I had initially been told they don’t suppress the immune system but other references say they do. As they are anti-fibrotics they are felt to suppress the inflammation that is causing the scarring and are thus considered meds that suppress the immune system. Different than chemo meds and Prednisone. Some patients with IPF have auto-antibodies (ANCA) so this is considered an autoimmune disease.
A very recent article (I think in NH patients) came out that showed an 80% reduction of anti-COVID antibodies six months after the 2nd shot compared to peak levels weeks after 2nd vaccine. I took my 3rd shot yesterday (my 2nd vaccine was 7 months ago). Pfizer. So far so good. Arm soreness only. Frank you are correct in what you say. IPF is not specifically in the question sheet but if you have a chronic condition you are eligible.
Don -
Thank you Denise for a great question and all the answers! I am now going to inquire about the 3 shot. My pcp, and medical grp I belong to, don’t seem to think I’m eligible. Time to be a squeaky wheel.
-
It is real easy to get the third shot, just walk into Walgreens or CVS or stop into the grocery store, most ask some questions and some do not. Immunity wears off at about 5 months. Watch the data from Israel, evan Fauci is impressed with the data. Good luck and belly up and get a shot.
-
Hi all, I have finally received my “booster” vaccine and so far so good. The fact that I have PF made me eligible. There is so much information out there that I feel like it’s sometimes a shot in the dark as to what we should do to treat our illness! I hope that we can get better information as time goes on!
-
I got a third vaccine last week on the basis that Esbriet(and I assume Ofev as well) is an immunosuppressive therapy. My doctor signed my region’s(Halton,Ontario) vaccine referral form and I got the shot at a pharmacy the next day. Previously I had a COVID spike antibody test to check my immunity from the vaccine(AstraZeneca in March and May. Just got Pfizer) and it was good at 1400(wife was 1700 and daughter(20) was 2500). Got the blood test at home from Dynacare.
Stay safe.Rob
-
My niece who has a genetic condition similar to cystic fibrosis, who gets pneumonia a lot and can’t fight infections because her cilia do not beat properly…was not vaccinated. She had bacterial pneumonia plus covid, recently. We thought “oh boy…this is not going to end well” Around day 6 she got the monoclonal antibodies infusion from her hospital in S.D. By the next day she felt way better and by day 12 went back to college. She was still on anti-biotics for the pneumonia. (She pretty much lives on anti-biotics)..tested negative for Covid maybe a week later. She had gone home where my sister and husband cared for her, neither vaccinated. Neither of them got Covid. They have comorbidities. It’s so strange how Covid attacks each individual so differently. Concerning the 3rd shot. My husband told me maybe a week or two ago that he looked into it and he is not eligible. Ill have to see if he has checked back recently.
-
I need to go to Chicago but I live in Oklahoma I want to fly but driving or flying terrifies me. Has anyone been traveling during the pandemic?
Nice to have a site to read about other people who live with IPF
Joyce
Thanks
-
I had the Pfizer in March and tested positive for COVID 2 days ago. I was diagnosed with IPF in March 2020. I ran a fever for 3 days, had a bad headache and cough, with body aches. The worst seems to be over here at day 5. I stayed out of the hospital and do not need oxygen. I’m very thankful for the vaccine and recommend it for everyone.
-
Hi Debra, glad to hear that you are getting better and didn’t require hospitalization or oxygen! I just got my booster. I hope it lasts longer than the second dosage.
-
Good morning all,
I just wanted to let all know that I am scheduled for he covid booster shot tomorrow October 1. After trying my respirologist and MD i called York Region Health Care Unit and booked the appointment on the phone! You need to be persistant with the choices on their email system!!
-
I received my third Pizer a week ago at Walgreens by simply declaring that I had pulmonary fibrosis. Second shot was February. I’m on Esbriet but that didn’t come up.
Log in to reply.