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    • #29695
      Denise Stogdill
      Participant

      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?

    • #29711
      Marisa Beard
      Participant

      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.

       

       

      • #29735
        Christie
        Moderator

        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.

      • #29754
        Bob Hodges
        Participant

        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.

        • #29800
          Denise Stogdill
          Participant

          Hi Bob, sorry to hear that you have contracted COVID!  What kind of infusion are you getting?  Hope you get well soon!

        • #30081
          Diane Beck
          Participant

          Are you referring to monoclonal anti-bodies infusion?

    • #29743
      Denise Stogdill
      Participant

      Thanks Marisa!  Sorry to hear about your husband!  What is a monoclonal infusion and what does that do for you?

       

    • #29744
      Denise Stogdill
      Participant

      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.

    • #29747
      john styles
      Participant

      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.

    • #29750
      Donald Salzberg MD
      Participant

      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

    • #29751
      Frank Loeffler
      Participant

      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

    • #29752
      Donald Salzberg MD
      Participant

      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!!!

      • #30111
        Bruce Hawn
        Participant

        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.

    • #29753
      Frank Loeffler
      Participant

      Thanks for the info….I am not sure that across the country there is uniformity  as the CDC guidelines do not include IPF

      • #29776
        Jerry Barnum
        Participant

        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.

      • #30118
        Lorraine Tracey
        Participant

        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!

    • #29755
      Donald Salzberg MD
      Participant

      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

    • #29778
      R. Chris
      Participant

      What are the ages of the deceased and the survivor?

    • #29783
      Judy Fraser
      Participant

      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

       

    • #29796
      Jill
      Participant

      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.

    • #29801
      Cindy Sears
      Participant

      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?

    • #29811
      Donald Salzberg MD
      Participant

      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

    • #29812
      Lorraine Tracey
      Participant

      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.

    • #29814
      john styles
      Participant

      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.

    • #30075
      Denise Stogdill
      Participant

      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!

    • #30077
      Rob
      Participant

      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

    • #30082
      Diane Beck
      Participant

      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.

    • #30086
      joyce
      Participant

      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

    • #30089
      Debra Lowder
      Participant

      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.

    • #30096
      Denise Stogdill
      Participant

      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.

    • #30101
      Carlo De Pellegrin
      Participant

      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!!

    • #30108
      George Beck
      Participant

      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.

       

    • #30112
      Bruce Hawn
      Participant

      For those that are interested, I got my third shot (Moderna) 6 weeks ago, have had no issues.

    • #30113
      Donald Salzberg MD
      Participant

      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

      • #30114
        Bruce Hawn
        Participant

        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.

    • #30125
      Amber
      Participant

      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

      • #30213

        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?

    • #30136
      Denise Stogdill
      Participant

      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.

    • #30222
      Amber
      Participant

      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..

    • #30233
      Fay
      Participant

      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.

       

       

       

       

      • #30236
        joyce
        Participant

        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

    • #30247
      Stu
      Participant

      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.

    • #30251
      James christenberry
      Participant

      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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