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    • #27595
      Sallad
      Participant

      Hospitalized with Covid in January and now recently diagnoses with pulmonary fibrosis.  What should I know and what should I be asking my drs.  Drs admit they don’t know enough about Covid and what will happen.

    • #27608

      Hi @sallad

      Thanks so much for sharing your story, though I’m so sorry to hear of the diagnosis of pulmonary fibrosis. Just confirming this diagnosis was made by a pulmonologist (lung specialist)? Have you had a high-resolution CT scan to confirm the diagnosis? Not that I’m doubting the doctor at all – as I am not a medical expert or physician – I just can share the importance experience of having an HRCT done to confirm the diagnosis of PF. Sometimes that is also done by a lung biopsy.

      I don’t know if doctors are using either of the two anti-fibrotic medications (Esbriet and Ofev) to treat COVID-induced pulmonary fibrosis, but this might be a question to ask as the goal from these drugs is to slow the fibrotic progression. Another question I’d ask early in the diagnosis is for a referral to a pulmonary center of excellence, if one is geographically situated to you. You can find those listed on the Pulmonary Fibrosis Foundation’s website.

      Does this help at all? Again, I’m not a medical expert and these suggestions should not replace your doctor’s advice, but just a couple things to consider from one patient to another.
      Char.

      • #33520
        DJ
        Participant

        Doctors tell my dad that one is not a candidate if the fibrosis is from COVID. INSANE! All politics if you ask me.

      • #34280
        Keith Emery
        Participant

        I was diagnosed with IPF in October 2015. Fortunately, it was progressing slowly and my breathing range was just a little below normal. However, in June 2022 we went on our long-awaited holiday (due to Covid 19 restrictions in previous years) to Portugal. Within two days after arrival, we were both struck down with Covid 19. My wife recovered reasonably quickly as did I, except for severe breathing difficulties, I could only walk about 10 yards and then had to stop and rest.

        On my return to the UK. my breathing became worse and I was rushed into hospital intensive care for a month before I was no longer reliant on oxygen. I have improved significantly since discharge but still suffer breathlessness after activities such as walking or exercising.

        My consultant pulmonologist decided that I should undergo a CT scan of my chest, to see what was going on. She identified that due to the ravages of the Covid 19 attack, my fibrosis had more than doubled in size, causing my breathing difficulties. Consequently, I have recently been prescribed Ofev to try and slow the progression. Covid 19 in my case then can/does affect existing IPF – I hope this helps a little.

        Keith

      • #34284
        Meredith
        Participant

        OFEV and ESBRIET are supposedly only for IPF not all PF. I have had IPF for two years and had a numbers of tests to determine the cause. None was found.

        At that time all test results had to be sent to drug manufacturers and my insurance company to prove my eligibility.

        They appear to be helping. At least I certainly feel better and am strong enough to walk 30 minutes a day. I’m 80 years old. Feeling well and strong is a big deal.

        One day at a time and stay grateful. Knowing the cause satisfies your curiosity but PF progresses anyway. Today is Tuesday. It’s still a great day

        Meredith

        • #34287
          Tomisa
          Participant

          OFEV is also for treating pulmonary fibrosis in Scleroderma, or SSc-ILD.

          • This reply was modified 3 days, 1 hour ago by Tomisa.
        • #34291
          Karla
          Participant

          I have NSIP/fibrotic and one of my treatment options was Ofev.

    • #27616
      Sallad
      Participant

      Thanks for the quick and thoughtful response.  Yes I am being seen by a pulmonologist (seen three times since discharged from hospital).  Had CT scan in hospital and scheduled for one next week.  In addition I have had 4 chest X-rays.  While the X-rays are showing improvement, the most recent one is abnormal.  Follow up tests are scheduled after the CT SCAN next week.

       

      I am also on asthma meds… Advair and albuterol.  Feeling very optimistic and your response is very helpful.

      I have started a second round of prednisone.  It is hoped some inflammation will subside before cat scan.

      • #27667

        Hi @sallad,

        Thank you for your reply and answering my questions. I’m so glad you’re being seen by a pulmonologist – pulmonary fibrosis is arguably one of the most tricky diseases out there, and even a lot of doctors admit they don’t know a lot about it. I felt such relief when I was finally put in touch with a Pulmonologist! Have you had the CT scan yet? I’ll be thinking of you and hoping for good news despite one showing some abnormalities.

        I know albuterol is for asthma and some people say this drug doesn’t help those with PF, but honestly, I find it helpful and that it provides relief. I hope you do too!

        Hang in there and feel free to connect with us anytime.
        Charlene.

    • #27632
      Kathleen Ryan
      Participant

      I had covid in March of 2020. Now I have pf. Mine was confirmed by a HRCT while I was hospitalized for pneumonia in November of 2020. My pulmonologist said it was a result of covid – I had already been diagnosed with bronchiectasis and Copd, and now this.

      • #27666

        Hi @kathleen

        Thanks for writing to us, though I’m so sorry you’re dealing with pulmonary fibrosis as a result of COVID. How awful! I don’t know if they are treating covid-induced PF with either of the two anti-fibrotic drugs to slow down the progression, but it may be worth asking your Pulmonologist about? They were originally approved for use in IPF (idiopathic) cases only, though they’re being used more and more so I didn’t know if this was an option for you. Are you really feeling the respiratory effects still post-COVID? So unfair. Please know that we’re here for you in any way that we can be supportive.

        Charlene.

        • #27670
          Kathleen Ryan
          Participant

          Hi, Charlene.  Thanks for your good ideas about medications.  I see my pulmonologist next month and also will have an x-ray at that time.   I’ll be sure to ask him about anti-fibrotic drugs.   Last I saw him he said he just wants to keep me as comfortable as possible.

        • #27672

          Goodluck Kathleen, and happy to help where (if?) I can!
          If you think of it, please let us know what your doctor says about the use of either Ofev or Esbriet for covid-induced PF. Not sure he/she will go for it, but I am curious about professional opinions on this.

          Char.

        • #33531
          Kathleen Ryan
          Participant

          Hi Charlene and thank you for the support!  Still have breathing issues, and I’m on O2 at night and 1-2 liters when active.  When I see the pulmonologist again, I will definitely ask about the medications.  I currently take two types of inhalers, but frankly,  don’t think they do much. I do suggest pulmonary rehab.  It helped and allows me to have a bit more confidence with this whole process,

        • #34311

          I had Covid in January 2022 and was severely SOB afterwards. In April I was diagnosed with IPF. Would love to read studies relating a Covid and IPF relationship.

          Thanks, Catherine

        • #34313
          DJ
          Participant

          Hi Catherine. You have PF. IPF is Idiopathic Pulmonary Fibrosis and that is when there are no known external causes for it, such as exposure to chemicals, etc. From what I understand the IPF means that it’s an auto immune disease. That the body is creating the fibrosis. In the end it’s the same problem, but one starts in the body, and one from other causes.

      • #33521
        DJ
        Participant

        Just curious…when you went to the ER, or hospital, did they treat your pneumonia? Did they put you on steroids? My dad was sent home with NOTHING. It progressed, just like all pneumonias do when left untreated. But because it was COVID, they said they do nothing! Just wondering if anyone else has had this experience. But it all comes down to what the test said. My dad tested positive for two months after COVID. If he tested Negative, they would have treated him. Am I the only one who thinks that is illogical?

    • #27634
      Brigid Thompson
      Participant

      Am very interested to read pulmonary fibrosis as a result of Covid infection.  This is exactly where I feel my husbands pf status stems from.  He doesn’t feel that’s the case.  As his problems seem to be getting speedily worse the gp has asked for another thorax exray and full blood tests this week.   Hope to get some response next week.   This is all because, whilst previous tests have revealed mild progression of the disease, we feel things are worse, ie coughing and spluttering a lot and immense fatigue.  The one positive is he sleeps well.  He can no longer walk any distance without stopping.  Currently he’s just on pain relief only for aching to chest area from coughing.

      Anyway, as his carer, I just thought I’d reach out and tell you what it’s like this side of the pond.  Thanks for your time.  Keep well and safe.

       

      Brigid

      • #27665

        Thank you for sharing with us Brigid, and I’m sorry to hear your husband is getting worse. This relationship between COVID and pulmonary fibrosis is newly emerging, and one I am eager to learn more about as well. I hope the tests scheduled for this week provide some helpful answers for you both .. I’ll be thinking of you!
        Charlene.

      • #34285
        Meredith
        Participant

        It sounds like oxygen therapy can treat the breathing issues. I dint want it but boy, do I feel better with it

        • #34301
          DJ
          Participant

          Hello. What does it mean when oxygen doesn’t help with breathing. My dad has lung damage from doctors doing the wait and see with covid pneumonia. Since they never gave him anything for it, he developed fibrosis. The oxygen keeps is o2 up, but it doesn’t help his breathing. Thank you.

    • #27642
      Bob P
      Participant

      Sallad, Kathleen and Brigid

      I met two weeks ago with a pulmonologist at mass general hospital who specializes in environmental and occupational related issues. We were trying to identify a potential cause of my IPF. The type and location of scarring in my lungs is different than typical IPF and more commonly found in people with these type of exposures. Based on a surgical biopsy I had completed in December, my scarring is in the airways and not the alveoli.

      We couldn’t find an environmental or occupational linkage and theorized that my scarring could be related to a viral pulmonary infection I had a couple of years ago that took a couple of months to resolve. The pulmonologist mentioned that they are starting to see this type of scarring with Covid patients. When it takes a long time for lung inflammation to resolve itself it can turn to scarring, which may be what happened in my case and maybe happening with others.

      I’ve had three lung function tests completed over the last several years and numerous scans. My IPF appears to progressing but at a relatively slow rate. Hopefully that is the case for you as well.

       

      • #33522
        DJ
        Participant

        They act as if all the other pneumonias don’t behave the same way. They all do this when left untreated. ALL pneumonias can cause scarring if left untreated, and sometimes even when treated to a degree. I feel like I’m living in a wacky world these days.

    • #29457
      Kathleen Kaufman
      Participant

      My husband was diagnosed with IPF in Sept 2020, & was started on Esbriet. In late Dec 2020 he was positive for Covid-19, & got monoclonal antibodies, which I suspect kept him out of the hospital. But as a result of the Covid, he got another very rare disease, Organizing Pneumonia. The pneumonia was so bad they couldn’t even see the IPF on a CT scan- they only saw the pneumonia. He was on a high dose of Prednisone for about 6 weeks. The last HRCT scan a few weeks ago showed the pneumonia was gone, but it did leave some additional scarring (obviously just what he doesn’t need!). While the IPF looks about the same on the CT scan, his pulmonary function tests continue to go a little down every time he has them- a bit depressing.
      Question for the group- he has an unpleasant metal/coppery taste in his mouth, and nothing tastes good to him. Foods that he used to really enjoy now taste bad to him, & there’s just nothing he eats that tastes good. Has anyone else had that happen?

      • #29458
        Christie Patient
        Keymaster

        Hi Kathleen @kathleenkaufman. I am not sure if Esbriet can have that metallic taste symptom. I feel like I’ve seen that floating around the forums in the past though (someone with more experience might chime in). I am wondering if your husband was on any antibiotics to treat his pneumonia? I have had that symptom from a course of antibiotics and it was extremely unpleasant, so I feel for him. Glad the pneumonia is gone and that it didn’t exacerbate his PF too terribly. Wishing you both the best.

        Christie

    • #29459
      Jeff Taylor-Jackson
      Participant

      Hi All,

      Truly sorry to hear that you have had Covid AND now have PF.

      I have recently been diagnosed with IPF, I have not had Covid however. One thing I have found since the diagnosis is the lack of awareness about the disease and the lack of funding for research.

      I’m not saying there isn’t any, I’m just pointing out that Cancer sufferers have more awareness and a bit more research.

      Whilst both are dreadful diseases to deal with, IPF takes just as many of us as Cancer, but it seems not as much is being done. It is getting better, that’s for sure.

      I speak as someone from the UK, other parts of the world may differ.

      Now I suppose my rambling point to all of this is: Now Covid is rampaging around the world, there does appear to be a link with lung scarring so this may well raise the profile of IPF and PF. I know there is a very small study in Kings in London, that will try to use the patients own white blood cells in to possibly treat lung scarring due to Covid. Lets hope that it shows positive results and this treament can be used for all sufferers of IPF, PF or Covid.

      Truly sorry for anyone who has been stricken with Covid and now with PF.

      Stay positive everyone!

       

    • #29476

      Hi Kathleen,

      I’m so sorry to hear of your husband’s experience with Covid and subsequent, pneumonia. How unfair and I do hope he is on the mend! Regarding the metallic taste, I’ve not experienced this personally from the anti-fibrotic I’m on (Ofev) but I have heard of others experiencing this on Esbriet. There is a ‘magic mouthwash’ that is prescription, which typically is for sores in the mouth post chemotherapy but I know one person who used this to coat their mouth and remove the metallic taste so food aversions weren’t as bad. It might be worth talking to your husband’s doctor about this to see if it can be prescribed.

      Thoughts?
      Char.

    • #32719
      Rebecca smith
      Participant

      I see this thread is from 2021, but I’m desperate for input/information.
      My story started in May. I’d been very short of breath while out of town on vacation. COVID didn’t cross my mind for a week. I had a false negative. But I drove home to my hospital. 10 days into this. COVID positive. Lungs horrible per CT.
      this is now 2 1/2 months later. No change in CT. “No improvement in scarring”.
      I am absolutely miserable. At rest with 2l oxygen I’m 94% sat. But the minute I move my pulse jumps and my sats drop.  A trip to the bathroom, (with 4-5 l oxygen) my pulse is 130 and sats drop to 70’s.
      how are you all doing? What kind Of medical treatment,nebulizers, inhalers have you been on?

      Not much info here on Pulmonary Fibrosis caused by COVID. But the end result is most probably Pulmonary Fibrosis.

      I’ve been on prednisone at home. Just tapered off and now back in hospital getting IV steroid and steroid news.

      • #32720
        Christie Patient
        Keymaster

        @rebecca

        Hi Rebecca, so sorry to hear you’ve got PF symptoms after COVID. Sadly, there isn’t too much to report as this is all new to the world of medical science. But thank you for sharing your story here. It’s important to be vocal about what you’re going through so we (especially including healthcare providers) can continue to learn about PF caused by COVID. And in the forums here, we can learn from each other and compare notes. I’m interested to see what others have to say about treatments. I don’t have anything to contribute there, but wanted to just say hello and thanks for bringing this thread up to the top of the chart again. It’s important.

        Hugs,
        Christie

    • #32735
      John K
      Participant

      @rebecca

      Hello,

      I also developed mild PF after a hospital bout with Covid and Pneumonia in March of this year. A cat scan from the hospital confirmed this.  My pulmonary Doctor has tested my Lung capacity three times now and for each time the results were good (according to him).  He doesn’t  want to put me on any meds at this time! My latest cat scan this month (July) showed I still have Pneumonia, ground glass opacity(whatever that means)  but no PF.  When I asked the Pulmonary Doctor about no PF on the cat scan he brought up my scan, zoomed in on an area and quickly showed me an area that appeared white and said I have PF.  Has anyone experienced this descrepancy and what should I do?  I don’t have any coughing but I do get out of breath if I start doing moderate activities and I am regularly fatigued.

      Regards John

      • #32737
        Maya
        Participant

        Hi John,

        Ground glass opacities usually represent inflammation (and a few other things) whereas true fibrosis is defined by distinct features such as honeycombing, traction bronchiectasis, reticulations. So in your case it seems you have inflammatory changes caused by Covid and they will hopefully decrease. In some patients these changes progress to fibrosis, but that’s a minority. Research shows that a lot of these changes in Covid patients are reversible.

      • #32746
        Christie Patient
        Keymaster

        Hi John, Maya gave you great information but I just want to expand on it a little bit. The word “fibrosis” means scarring. So, we have the unfortunate issue of “pulmonary fibrosis” meaning both “scar tissue in the lungs” which could be the result of illness, injury, or chronic inflammation, for example… and “the rare progressive disease known as pulmonary fibrosis”, which this forum is about. Scar tissue from inflammation, COVID, or something else may not be progressive. The disease PF/IPF is. You should ask your doctor to clarify what type of scarring they see on scans, and if there are other indicators of disease–things like Maya mentioned, such as honeycombing. Hope this helps.

    • #33471
      DJ
      Participant

      They are making people believe that COVID is the only pneumonia that causes pulmonary fibrosis.  All pneumonias have the potential to do that. However, with covid pneumonia, they will not treat you.  That is why the higher rate of issues, and unfortunately deaths.

    • #33559
      Cathy Settle
      Participant

      Hi, I had Covid during the first wave March 2020, had pneumonia symptoms but it was when we were encouraged to stay home unless turning blue!
      I’ve been coughing since with shortness of breath and severe fatigue amongst other debilitating symptoms so have presumed I had Long Covid.

      I’ve had 3 CT scans, the 2nd was followed by a face to face consultation and I was shown some opacities just in one lung which was described as possible inflammation. I was informed that I needed another scan to check that it didn’t change to fibrosis. Following my 3rd scan the consultant merely said it had gone slightly worse but I have received a letter saying there is interstitial abnormalities in BOTH lungs and further tests are needed to see if this is post Covid fibrosis or interstitial lung disease. My GP has tried to reassure me that Covid inflammation will get better but I am so scared as from what I can find, it would seem that the truth of the matter is that pulmonary fibrosis doesn’t get better but slowly (or sometimes quickly) gets worse.

      I’m getting frustrated with getting fobbed off with this whole post Covid journey. I’ve bought myself a pulse oximetry gadget to continuously monitor my heart rate and oxygen levels. I’ve been pacing so lead a sedentary lifestyle now. My Pulse randomly fluctuates between 48 – 140bpm and my oxygen varies between 96% – 88%.

      Is my GP right to dismiss this as something that is seen but clears up in Covid patients?????

    • #34275
      DJ
      Participant

      Is anyone taking NAD+ and zinc? There was a study done that showed good results taking the two supplements together. https://www.kplctv.com/2022/09/09/health-headlines-zinc-may-stop-reverse-progression-deadly-lung-disease/

    • #34302
      DJ
      Participant

      Other than Ofev and Serrapeptase, does anything else help? I’m afraid to have my dad try those because of the potential awful side effects. He does not need that now. Thank you.

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