PF and symptoms

Had COVID twice ..left moderate lung scarring. Oxygen level would fluctuate from low 80’s to low 90’s. Took 2 rounds of physical therapy and it helped. Now taking pulmonary rehab using NuStep machine . My oxygen level is now staying up. Thinking of purchasing a NuStep machine for home use? Very expensive but worth it?? I want to be able to walk a half a mile with no out of breath issues! My heart is ok. My arthritis is much worse after COVID. I take ibuprofen when necessary. Only other med is LDN at 3.5 mg but need to increase a bit . I can walk about 10 min and wiped out too😟.Have you had COVID?

I had Covid 2 years ago and didn't have much trouble after I was over it. Just since the pneumonia last March have I had all these problems. They tested for Covid and it was negative. I just feel like I should be better by now. Then there's the cough!! 😷
I'm not sure what LDN is. I take actemra for RA and prednisone, sulfasalazine and Celebrex. Along with different supplements.

In Jan 2021 I tested negative the first time I had COVID . Dr thought it was a false negative . I had pneumonia then, too.I knew it must have been a false negative because I had not even had a cold or flu etc in 50 years. Second time 2022, we were on a bus tour and 20% of the bus got covid, so I didn’t bother to get tested. Dr has decided that now I have long covid. I am on no meds, except LDN (low dose naltrexone) for long COVID. I do take ibuprofen when needed for arthritis pain.

Do you know the Pulmonary Fibrosis Organization? I put the link below. It has a lot of good information.
https://www.pulmonaryfibrosis.org/

I have NSIP and was diagnosed at Mayo in June 2023. I am taking 10 mg of Prednisone and 2000 mg of Cellcept daily. I too am pretty tired by 2-3 pm. I am 70 years old and have been active with work and moderate exercise for years. I understand that some of the tiredness comes from medication. Some days my back hurts so much it’s hard for me to stand for longer than 5-10 minutes. Also, the weather affects lots of people with PF. Especially sudden changes. I walk in my house daily as my allergies can be a problem outside. Also do breathing exercises and light weights most days. Haven’t tried pulmonary rehab yet due to my meds causing immune suppression and don’t want to get sick. I hope 5his helps. Blessings 🙏

What kind of breathing exercises are you doing? I believe my fibrosis is caused mainly from my autoimmune disease. Schleroderma and RA along with Sjögren's. I haven't started Ofev yet. I'm hoping if or when I start taking it I won't have too many problems with it.
Thank you for your response.
Blessings to you as well🙏🏼

Yes I've signed up on their forum. They do have a lot of information. I seem to get more responses from people on this Mayo forum though.

Hi! I bought a breathing exercise product called The Breather on Amazon. I really believe it has helped strengthen my lungs. It also has an app with it. They also have a support team who will answer questions. I try and use it at least once a day. Also, check out Breathing With Elizabeth on YouTube. She is a respiratory therapist with a lot of knowledge and exercises. If you enjoy reading, Dr. Noah Greenspan has a couple of really great books about PF and pulmonary exercises. Also, google “ pursed lip breathing” which I use a lot when I have SOB. This exercise will not only strengthen your lungs but help you get your breathing back to normal. It takes a lot of patience which I guess is my lesson for this time in my life! 😁

Thanks for all the info. I bought the O2 trainer but didn't have much luck with it. I had read about the breather too. I think I'll invest in that. I'll check out the YouTube videos too. I surely appreciate your suggestions.
Carol

Absolutely! The best of life, breath and comfort to you Carol. Amy