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Vaccinated PF people and COVID 19
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For those that are interested, I got my third shot (Moderna) 6 weeks ago, have had no issues.
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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.
Doctor Don-
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.
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Hi everyone
Now i am confused
Ihave IPF..
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
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Hi @amber
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?
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Hi Amber,
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.
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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..
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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.
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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.
Joyce
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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.
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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.
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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.
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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!
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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.
Norm -
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!
Linda Maguire
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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?
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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
Norm -
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
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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.
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<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!
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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.
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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.
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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
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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
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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.
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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.
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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
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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)
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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.
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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.
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<td width=”60″>11/7/22</td>
<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>
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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.
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