• Acute Exacerbation

    Posted by Temple Mayo on February 2, 2025 at 12:56 am

    Hi All. Would for some forum members to write about acute exacerbation. in IPF patients I saw a discussion from 6 years ago, but am hoping for more experiences. I also know that these exacerbations can be fatal. I hope that any of you having had an acute exacerbation could describe how it occurred and what your treatment was. Thnk you!

    Temple Mayo

    Debra Lowder replied 1 day, 22 hours ago 8 Members · 8 Replies
  • 8 Replies
  • Steve Dragoo

    Member
    February 6, 2025 at 3:04 pm

    Hi Tempo – AE can be substantially different per individual and per incident. Had at least 2. The 1st was almost devastating. Initially I could not not sit up in bed. Didn’t eat for almost 6 weeks but I don’t recommend it as a weight loss program. It took almost 10 months before I could help again around the house and I have never recovered completely since Sept 2020. The 2nd was May 2022 and was much milder mainly was very tired and weak but got through it ok.

    Any cold or – worse – the flu has a harsher impact on those with IPF I was 1st diagnosed with ILD Oct 2016 in the Philippines at age 67 and will be 76 in May. So this coming Oct will be 9 years into this lovely disease.

    Lots of things you can do to help yourself.

    Stay well…
    Steve

    • Ric

      Member
      February 7, 2025 at 2:26 pm

      Hi Steve:

      Were you the guy who used Hydrogen Peroxide and was able to heal one of your lung scars?

      Rick Hansen

    • Rod Branham

      Member
      February 7, 2025 at 7:26 pm

      Steve, I can attest to that. I got Pneumonia in December and it took 4 rounds of antibiotics and a round of Prednisone to get me back on tract. But, in that time I lost 14% of my lung capacity. I was in a trial and doing well with stable lung capacity. I went in for my last appointment in a trial I was in for a drug that STOPS the progression of IPF and my doctor was upset that I had been put on 4 rounds of antibiotics and gave me a round of prednisone. Since they were doing breathing tests at every 3 month appointment, that is how I knew that the Pneumoni had taken away 14% of my capacity. So you are dead on about what you said

  • Temple Mayo

    Member
    February 7, 2025 at 4:21 pm

    Thank you Steve.

  • Charlene Beck

    Member
    February 7, 2025 at 7:02 pm

    great question. I keep hearing this term but dont have any idea what it could look like but Steve gave me some insight. More examples would help me tho.

    I have IPF since 2020 appx and have chosen to NOT have lung transplant–

    I remain at home mostly so not a lot of exposure to others. I walk daily and i am on Ofev w little to no side effects. My mom and 2 brothers died of this disease.

    I wondered if Steve who answered you has had a transplant or not as his longevity is hopeful.

    Thank you for any help you can give me. I would love to speak w someone w the disease. I feel very alone. Char B. in new mex

  • Samuel Kirton

    Member
    February 7, 2025 at 7:13 pm

    I agree with Steve Dragoo… the reasons for an exacerbation are as unique as the individual. I was fortunate that I did not have any exacerbations prior to transplant which I would qualify as acute. Following my transplant, I had three. COVID-19 once, pneumonia once, and a narrowed bronchial stem. All three were handled quickly by my care team. In my view the critical factor is the patient must recognize they are experiencing an event that is an acute exacerbation.

    Sam…

  • Libby

    Member
    February 8, 2025 at 8:34 am

    I do not have IPF but my ILD (hypersensitive pneumonitis) results in my having similar issues. I had an exacerbation in Jan ’23 after being quite sick with a bad virus that was going around. Lots of coughing that wouldn’t go away. My shortness of breath was acute. I ended up on Prednisone for several months. Then in the Spring of ’24 I started getting short of breath, but I had not been sick at all, and it happened so gradually I really wasn’t sure what was going on. I thought it was probably allergies but no, it was the lungs again. I still can’t figure out how that happens without even having a cold ! So far my exacerbations have been managed with an antibiotic and Prednisone. I’ve found that it does take several months for my lungs to recover even after I’ve finished the Prednisone. It’s almost like rehabbing an injured muscle.

  • Debra Lowder

    Member
    February 8, 2025 at 9:40 am

    Best advice ever- keep getting vaccines. Get ALL that are available- pneumonia, flu, COVID, RSV. Also, keep practicing all routines we had in place during the pandemic. Be diligent and take Vitamin C, D, turmeric and eat healthy!

    Debra Lowder

Log in to reply.