- This topic has 67 replies, 43 voices, and was last updated 2 months ago by Kim Morrison.
August 26, 2021 at 9:05 pm #29695
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?
August 27, 2021 at 10:44 am #29711Marisa BeardParticipant
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.
August 30, 2021 at 2:02 pm #29735Christie PatientParticipant
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.
August 31, 2021 at 2:49 pm #29754Bob HodgesParticipant
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.
November 3, 2022 at 3:07 pm #33490
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.
August 30, 2021 at 9:31 pm #29743
Thanks Marisa! Sorry to hear about your husband! What is a monoclonal infusion and what does that do for you?
August 30, 2021 at 9:42 pm #29744
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.
August 31, 2021 at 8:03 am #29747john stylesParticipant
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.
August 31, 2021 at 2:26 pm #29750
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.
August 31, 2021 at 2:27 pm #29751Frank LoefflerParticipant
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
November 4, 2022 at 3:42 pm #33492
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.
August 31, 2021 at 2:37 pm #29752
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!!!
September 30, 2021 at 6:17 pm #30111
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.
October 21, 2021 at 3:34 pm #30259Bill KellyParticipant
Got a booster at Walmart Aug 31 after I said we were regularly on Prednisone. It was a full dose of Moderna
August 31, 2021 at 2:39 pm #29753Frank LoefflerParticipant
Thanks for the info….I am not sure that across the country there is uniformity as the CDC guidelines do not include IPF
September 1, 2021 at 2:26 am #29776Jerry BarnumParticipant
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.
October 1, 2021 at 7:08 pm #30118Lorraine TraceyParticipant
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!
October 21, 2021 at 3:43 pm #30260Bill KellyParticipant
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.
August 31, 2021 at 2:51 pm #29755
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.
September 1, 2021 at 8:25 am #29778R. ChrisParticipant
What are the ages of the deceased and the survivor?
September 1, 2021 at 2:08 pm #29783Judy FraserParticipant
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.
September 2, 2021 at 2:52 pm #29796JillParticipant
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.
September 2, 2021 at 7:20 pm #29801Cindy SearsParticipant
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?
September 3, 2021 at 5:15 am #29811
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.
September 3, 2021 at 7:59 am #29812Lorraine TraceyParticipant
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.
September 3, 2021 at 8:58 am #29814john stylesParticipant
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.
September 27, 2021 at 8:37 pm #30075
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!
September 28, 2021 at 3:30 am #30077RobParticipant
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.
September 28, 2021 at 2:47 pm #30082Diane BParticipant
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.
September 28, 2021 at 3:38 pm #30086joyceParticipant
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
September 28, 2021 at 6:41 pm #30089Debra LowderParticipant
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.
September 28, 2021 at 10:06 pm #30096
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.
September 30, 2021 at 9:32 am #30101Carlo De PellegrinParticipant
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!!
September 30, 2021 at 4:05 pm #30108George BeckParticipant
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.
September 30, 2021 at 6:20 pm #30112
For those that are interested, I got my third shot (Moderna) 6 weeks ago, have had no issues.
September 30, 2021 at 6:34 pm #30113
Hello Bruce et al:
At Walgreens (and CVS) the form asks a bunch of questions. There is no mention of IPF per se but they gave an option “chronic medical condition” which this certainly is!! Once you circle that there is no issue getting a booster. Our government is giving lots of mixed messages about the booster. If one is immunocompromised the 3D shot is considered a part of the other two so technically not a true booster!!!. Regarding whether OFEV is an immunosuppressant—I’m not sure. It’s an antifibrotic and not chemo. I have not read an article stating such but i will research this more. But anybody with IPF qualifies for the third shot.
October 1, 2021 at 10:16 am #30114
Went back and looked, saying to myself, I know I am not crazy. Now that I think about my conversation with the pharmacist, I whipped out my phone and did some quick research, and showed him the search result below without reading all of it. Both the Pharmacist and I must have seen “OFEV a medicine that affects your immune system . . .”. and stopped there Now that I have actually read it, I realize I was mistaken, the post is talking about interactions between OFEV and medicines that “affect your immune system”. That said, my thought is still to get the 3rd shot however you can. Thanks for catching my mistake, as I do want to be accurate.
October 5, 2021 at 10:16 am #30125AmberParticipant
Now i am confused
And take cortison at the moment 20 mg a day..must keep on taking it try,d Cell cept but that did not do anything fir me..only gave my tummy troubles
But i am adviced not to be vaccinated untill i perhaps can go off the cortison for a while..what is likely not gonna happen..i get realy difficulty breathing if i dont take it..
My pulmonologist adviced not to take the vaccine
October 17, 2021 at 1:53 pm #30213Charlene MarshallKeymaster
I agree with Denise @gunz12345 re: a second opinion. Not saying your doctor’s isn’t correct, but its always reassuring to have a second opinion, and I know lots of patients on Cellcept or who are otherwise immunecompromised (like myself) who have taken the vaccine as the benefits outweigh the risks. Have you received it since you made this post, or been advised a different way?
October 5, 2021 at 8:31 pm #30136
If I were you I would get a second opinion. I take cellcept all the time and every now and then take prednisone for flare ups. Both my rheumatologist and pulmonologist agreed that I should do my COVID vaccines as well as my flu, pneumonia and shingles vaccines. Up to date I’ve had three COVID vaccines, a flu vaccine and a pneumonia vaccine with no problems. I didn’t stop taking my cellcept or prednisone to take my vaccines. My rheumatologist said that as long as the vaccine wasn’t a live vaccine I would be ok. The pharmacist can tell you if a vaccine is live. Good luck to you.
October 18, 2021 at 5:31 am #30222AmberParticipant
Hi there ,
I am now on prednison still 20 mg a day
Cell cept has been changed because it did not benefit me,but made me ill ..so now i been put on imuran with my pretnison..
For 6 months..after only my prednison has been reduced to 7 the dokter told me i can get a vaccine..not before…so i still have to wait a few months..
October 19, 2021 at 4:26 pm #30233FayParticipant
Hi from Australia- reassuring to hear your comments on a third vaccine dose. I had a Rituximab treatment in May/June 2021 and had to wait 3 months before the vaccine dose. To prepare for Rituximab I went off Tacrilimus completely and Immuran for 2 weeks after. I also take a maintenance dose of Prednisone.
Having second dose of vax tomorrow and my Rheumatologist already said a third dose necessary. This has only just been approved for immuncompromised in Australia ( yes, a lag) so I hope to have in 2 months time.
It has been a constant fear in the back of mind about catching COVID while on immunosuppressive meds. Particularly with Rituximab depleting B cells.
Your stories provide some comfort that it is possible to survive COVID with vaccination. Thank you.
October 19, 2021 at 7:06 pm #30236joyceParticipant
I understand your fear I am also on rixtuan I have had 3 doses of the vaccine. I try to be very careful my daughter in laws
grandfather had a break thru infection after being vaccainated and died. And hearing today about Colin Powell give me pause for thought. But we must live our lives and be very careful hope you stay safe and remember. We have a promise when no one will say I am sick.
October 19, 2021 at 11:22 pm #30247StuParticipant
I have never read anywhere that Esbriet (Pirfenidone) has a negative effect on the immune system. If someone has any information that says otherwise please post it in this forum. This would be valuable to know in regards to COVID vaccines.
October 20, 2021 at 2:00 pm #30251James christenberryParticipant
Two weeks to the day of getting the Pizer booster & Flu shot, my wife( her booster was a week later) and I both tested positive and had no symptoms for 3 days. We were exposed by 15 month family member, 2- 4 days pre-test.
Esbriet is the only IPF associated drug I am taking other than 2 lpm O2 at night and with excursion. Our GP got us the monoclonal anti-bodies infusion 6 days in and the following day I had what most would call”Flu” like symptoms with a 99f fever that lasted only 3 hours after taking Tylenol. The whole time all I had was a runny nose and our SPO2 stayed above 95 on room air. Wife also had very light “flu symptoms” but with head ache & head pressure with 100 temp for 3 days. Today is the 12th day since testing positive and we have both been normal for the last 5 days. My advice from Pulmonologist was “I should be fine being fully Vax’d, but to stay up and about and practice breathing exercises and contact him if SPO2 dropped”. I fully believe the vax kept us from having a worse illness. While we were getting the anti-bodies infusion our nurse stated that if we had been immunecompromised we could have gotten it without being COVID positive.
October 21, 2021 at 2:50 pm #30254Judith Stryker-McGillParticipant
I have IPF and received the Pfizer vaccine in May and the booster in August. My husband, who does not have IPF and is not immunocompromised, received the vaccine in May and the booster in October. About nine days ago, he developed a dry persistent cough which lasted one day. Three days later I developed the cough, fever, aches, and fatigue. We both tested positive two days after my symptoms started and received monoclonal antibodies two days after the positive test. It has been two days since the infusion and I continue with the fatigue and cough but am afebrile, my sats are unchanged and shortness of breath is no worse than usual. I believe that without the vaccine the outcome would have been much, much worse. I am so grateful that the vaccine was available.
October 21, 2021 at 3:22 pm #30256
Thanks for your feedback James. I’m sorry you and your wife caught COVID but I’m glad to hear that you made it through without any major issues! It gives me hope should I catch COVID. I always worry about the respiratory issue being the most complicated but in your case that wasn’t so. Keep up your speedy recovery. Thanks!
September 30, 2022 at 5:28 pm #33194Norman BeattieParticipant
Didn’t need to respond at the time as I hadn’t contacted Covid. Now I have and feel blessed that I had all 4 shots. Most definitely do not feel as good as before Covid. Less energy and shortness of breath now.
October 5, 2022 at 4:15 pm #33228Linda MaguireParticipant
After a trip to Croatia in July, 2022 where a few of the members in our tour group came down with Covid (& were subsequently isolated), I tested positive with Covid 2 days after we returned. I had had the 1/2 dose 2nd booster 3 weeks before the trip. My only symptoms were nasal congestion & fatigue. I credit the vaccinations & boosters with keeping me from getting more severe symptoms & intend to get the bivalent vaccination that also addresses the Omicron variant as soon as I am eligible. I strongly believe the vaccinations are important for everyone, but especially those of us with IPF!
October 5, 2022 at 6:03 pm #33231Judy FraserParticipant
I tested positive for Covid (two days after getting the bivalent vaccination–much too soon to have any bearing). I’d had all 3 boosters before that. I was so scared of getting Covid with my IPF and have been extremely careful. I’d been on a short trip and plane ride, where I kept my mask on the entire time.
My Covid was a big nothing. I felt a little tired. That’s all. My pulmonologist prescribed the 5-day Paxlovid treatment, and a day or two after I finished I tested negative. He said that it was a very good thing that I was fully vaccinated and I agree, but we’ll never know, will we?
October 6, 2022 at 10:21 am #33239Norman BeattieParticipant
Good morning Canadian here and I have had all the shots which include 2 boosters. Went to Whistler with all the family caught covid 2 days after returning in early August. Miserable for several days. Started with sore throat and then fatigue, then stuffy nose and a couple days later chest congestion. Breathing became difficult, sleep almost impossible just when you feel you should go to the hospital the chest congestion started to ease and a day and half later was much better. Diagnosed 5 yrs ago not on oxygen yet but probably should be now at least at night. There are lingering affects from covid and I do not feel as strong as I did before. Hoping you the best
October 6, 2022 at 12:08 pm #33241Vicky ForgetParticipant
Hi double vaccinated and had covid 6 months later. Did the vaccines help, or did they cause me to be very sick (shortness of breath, tired and no energy) for about 3 weeks? Being part of the world’s biggest study, we will never know but maybe our great grand kids will. Wish I never got the vacs
October 6, 2022 at 2:43 pm #33243RIkParticipant
HI… I had the original Covid-19 vaccine (Moderna) and then both of the boosters a year later. A month ago I got Covid on a trip. The symptoms were slight chills and a fever for 1 night, then tired for 2 days… similar to the flu. Totally recovered within 3 days. I am not getting any addition boosters since the longterm effects have not been studied, I am concerned about heart issues…I was diagnosed with IPF 4 years ago.
October 6, 2022 at 3:07 pm #33244Sandra GrayParticipant
<p style=”text-align: left;”>I was exposed to Covid in December at a family dinner. It was our first time being in a group like that since Covid was detected in our community. My husband and I both tested positive for Covid a few days later. Neither of us is vaccinated but follow the FLCCC (Frontline Doctors) prophylactic protocol. After testing positive, we began the early treatment protocol based on ivermectin. Fortunately neither of us became ill and only experienced mild fatigue for a couple of days. I was fearful that the infection might affect my breathing and arranged to get the monoclonal antibody infusion in case needed. My illness was mild though and I decided not to get the infusion.
I use supplemental oxygen as needed with exercise. Although formally diagnosed only a year ago, my pulmonary fibrosis was first detected in a scan for an unrelated problem about 8 years ago.
It seems responses to Covid are so varied and dependent on the individual. I hope your experience with infection will also be mild!
October 6, 2022 at 4:44 pm #33248Des. ByrneParticipant
I had 4 vaccinations over several months when I contracted asymptomatic Covid-19. About 8-9 days after testing positive, I suddenly collapsed, having great difficulty breathing. I was walking in my apartment, on ambulatory Oxygen, 4 litres, at the time, with no problems. I was rushed to hospital & was put on full time Oxygen 4 litres with full mask, instead of a canola. After about 7 days I was discharged but was re-admitted with pulmonary embolisms a week later. I was again discharged 5 days later. I have had no further problems. That was all back in May. I was very tired fo many monhs, falling asleep any time of the day. This has tapered off. I received my 5th. Booster vaccination last week.
October 11, 2022 at 5:59 pm #33273John KaneParticipant
I have had IPF for about 3 1/2 years and take Ofev for it. My wife and I have had the two Covid shots and one booster, last year.
Three months ago we both tested positive for Covid. We both had fatigue(on top of what I already have). My wife had heavy congestion and I had heavy GI issues. Don’t know why we were different but at least I did not get the congestion. These lasted for about two weeks, I lost 7 pounds, not the diet plan I would recommend though. Our MD had us take Paxlovid which greatly helped. I don’t know how it would have gone if we had not had the Covid inoculations.
October 19, 2022 at 6:42 am #33320Mary Ellen McKennaParticipant
good morning i have pulmonary fibrosis diagnosed in Oct 2020. just got covid and have been hospitalized so far for a week. getting the 5 doses of remdivisir for that. i am miserable and have not gotten any relief. good luck to all of us as we will need all the help and prayers possible. i have been on oxygen 24/7 for 2 years. It just really sucks. Thank God i have been vaccinated and boostered or wou;d not b e typing this. Take care
October 25, 2022 at 3:00 pm #33378Mary Ellen McKennaParticipant
I was not feeling good so went to the ER and diagnosed with Covid. I have has vaccines and a booster. My dr said that if I had not gotten the vacs/booster i probably woulnd not have made it. It really was horrible Please get whatever meds you can because it could kill you. I have PF and am on 24/7 oxygen. had to have 5 treatments of remdivisir and still very sick
November 2, 2022 at 3:52 pm #33472DJParticipant
In my opinion people with health issues should not get the COVID vaccine as it is highly inflammatory. This is why a woman must wait three months before getting and mammogram after she’s gotten the vaccine. The mammogram with show inflammation, and they will not be able to tell if it’s from cancer or inflammation from vax. I can’t believe they are telling people who have health issues to be the first to get this vaccine. From what I understand, the flu vax is not as inflammatory.
November 2, 2022 at 4:07 pm #33474Linda MaguireParticipant
Although the covid vaccine may not prevent you from getting covid, it lessens your symptoms & could save your life!! Those of us with IPF are at higher risk & more likely to be hospitalized or die from covid, so the vaccine is an important protection. Duke University says it is NOT necessary to wait for a mammogram after getting vaccinated. I had a mammogram a week after my 2nd booster & had no issues.
November 4, 2022 at 6:19 pm #33493Christie PatientParticipant
Hi DJ, I understand your statement is an opinion, but I must add some information for clarity for other forum members. Yes, vaccines are “inflammatory” by nature. All of them are. So is getting a cold, taking a hike, or eating something you’re mildly allergic to. Inflammation is a normal part of being a human. Prolonged inflammation can cause problems, yes, but the inflammation caused by vaccines is negligible.
The way vaccines work is by stimulating your immune system with innocuous parts of a contagion–or in the case of the mRNA COVID vaccines, with a harmless part of the coronavirus that causes COVID, called a spike protein. The inflammation caused by vaccines is short-term, often not even noticeable, and is easily treated with anti-inflammatory medications like Tylenol.
Scientists and doctors widely agree that the vaccines are safe for most people, and their recommendation to give them to people with health issues or compromised immune systems is because the potential risks of getting COVID are far greater than the risks of getting the vaccine. Incidences of injury from vaccines are extremely low, whereas incidences of lasting health problems (long covid, PF, chronic hypoxia, etc.), and death are significantly higher in people who have not been vaccinated, especially those with pre-existing conditions like PF
March 26, 2023 at 12:26 pm #34750Gina Myhill-JonesParticipant
Sadly you’ve been getting some questionable information. Mammograms, X-rays, CT scans… there is no indication for wait times after receiving any vaccine. I did all three in the same month after booster number three. My very good friend is a radiologist and I trust her professional guidance. Respirologist, GP, …..even the dentist all completely unconcerned with X-ray exposure after any vaccine. ( up to date on my tetanus too… same time frame)
March 26, 2023 at 12:19 pm #34749Gina Myhill-JonesParticipant
I got to spend a vacation week in a private room in hospital last summer ! Really, the view of Kelowna and the lake was fabulous ! My fault actually, I waited until I was really sick to go to ER. Vaccine did its job though, no harm done and bounced back quickly.
March 27, 2023 at 11:14 am #34755
Sorry, but there is a lot of medical opinion that is misleading relating to COVID-19, vaccination, inflammation, mammography and probably a lot more. I am a physician and one that is especially interested in SARS-CoV-2. I wrote an article for the lay public back in 2003 at the start of the first SARS pandemic, and again in 2020 alerting those patients with immune compromise as to the coming epidemic ⇢ pandemic. I have read many hundreds of peer-reviewed articles on COVID-19.
Everyone has a different response to vaccinations and much of this is due to the age and overall health of the patient. The hyper-inflammatory responses leading to myocarditis is rarely seen in the older-aged and immunosuppressed populations but mostly in young males in their teens-twenties and thirties.
The immune system ages as we age. Immunity is compromised by many illnesses including obesity, diabetes, CKD (chronic kidney disease) and heart disease, as well as various solid tumors and cancers involving the blood and lymphatic tissues.
In such immunocompromised individuals, the current mRNA vaccines from Pfizer and Moderna are critical to prevent hospitalization, ICU, and death. The overwhelming majority of those who have died 2° COVID-19 are those patients with illnesses in the preceding paragraph. Yes, natural COVID-19 does confer immunity but in some individuals it also leads to “Long COVID-19″ which is medically termed post-acute sequelae of COVID-19 (PASC). And COVID-19 being initially and primarily an upper respiratory viral infection can lead to serious and long-standing pulmonary pathology– the last thing that a patient with idiopathic pulmonary fibrosis (IPF) or any form of pulmonary fibrosis needs.
I have an immune malignancy–not IPF. I am elderly, have heart and renal disease. I have had a total of 5 vaccinations: 2 foundation vaccinations + two monovalent boosters + one bivalent booster. I check my Ab (antibody) response to these vaccinations with a lab test: LabCorp test code 164090: SARS-CoV-2 Semi-Quantitative Total Antibody, Spike using Roche Elecsys. I just did this last week with an antibody level of 14,212 U/ml (upper limit is > 25,000 U/ml). My last booster with the bivalent vaccine was in Nov of 2022. Therefore, this is ≈ 4 months since bivalent booster.
<td width=”166″>Bivalent Moderna Booster</td>
<td width=”524”>This is 3<sup>rd</sup> booster after 2 vaccinations with Pfizer and first booster Moderna 100mcg, 2<sup>nd</sup> Moderna 50 mcg.</td>
In comparison, a patient of mine with prostate cancer who only has had initial 2 vaccinations plus 1 booster (monovalent) had the same test with a level of only 84 U/ml.
A publication by Gilbert et al. from 2022 suggests that levels of ≈ 3,800 will confer major protection.
You should print out and share this info with your primary MD. There should be some statement from those leading experts on IPF about the importance of vaccination in patients with IPF.
Lastly, any vaccination can result in a false positive interpretation relating to mammography. This is because the vaccination given in the R or L arm will stimulate the immune lymphoid tissue in the armpit (axilla) of that arm and if the patient has a robust immune response it can lead to an enlarged lymph node. Therefore, if mammography is done, for example, and there is concern about lymph node involvement in the R arm and the patient had their vaccine given in the R arm, the patient would or should be restudied a month or more later. But it is best to delay mammography for screening or follow-up if a vaccination of any kind was given in the upper arm (deltoid) region of the patient. I would need to re-review the peer-reviewed literature to see if there is a recommendation regarding how many months.
March 28, 2023 at 2:17 pm #34778JamesParticipant
I have IPF and was stuck for the COVID twice since 2020 booster 2022 and tested positive two weeks ago, no symptoms though.
March 28, 2023 at 3:43 pm #34781
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.
March 30, 2023 at 8:02 pm #34804Rhonda KramerParticipant
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.”
March 30, 2023 at 8:42 pm #34806
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.
April 4, 2023 at 2:10 pm #34810Kim MorrisonParticipant
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.
April 5, 2023 at 8:33 am #34821Bonnie WelchParticipant
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.
April 5, 2023 at 8:35 am #34818
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:
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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