This happens to me too and I also wonder why. I would also say my ipf is in a mild stage. It also happens it starts in the high 90s, goes down to eve the 70s and quickly goes up to its usual between 93 and 95. It is very difficult to understand.

Hi Sue,

Here is some info in a pdf file from the UK National Health Service about an OPEP device.

<span class=”wHYlTd GS5rRd QXonBd”>https://www.uhcw.nhs.uk/download/clientfiles/files/Patient%20Information%20Leaflets/Medicine/Respiratory/Aerobika%20mucus%20clearance%20device.pdf</span&gt;

Two regular CT scans clearly showed the progression of fibrosis. With an HRCT, I was finally diagnosed with IPF.

Hi Kim. Thank you for sharing your experience with Haritaki. I will order some powder (not capsules) and wonder how many grams there are in each of the capsules you take.

Best wishes Monica (in Sweden)

Let us know the outcome of the visit of the respiratory nurse tomorrow. All the best. Monica

Hi Gavin,

Sorry to hear about all of this. I have IPF and live in Sweden. I don’t have any major issues yet, but feel bad not getting to speak to the pulmonologist and do feel alone with this. Just want to tell you I read your message and am sorry I don’t have any advice for you. Hang in there. Monica (in Sweden)

Thank you Don for yours and everybody else’s generous input. However, being 80 years old, I don’t feel like taking a risk on Ofev/Esbriet or a biopsy with potentially overwhelming side effects but instead aim to focus on keeping as fit as circumstances allow and taking suppplements I believe in.
Something that surprises me, though, is that I… Read more

Thank you Adele for your input. I think I may have cracked th code of the uer interface of the forum. Had a lot of problems replying but it turned out it was quite straight forward… I did not loose weight between the two spirometry tests I was referring to; my BMI was about 26,7 at both tests, and yes I did have extensive blood tests, at least… Read more

Thank you Ken. So good to hear good news about IPF. I don’t understand the user interface of this forum and wonder how I have managed to reply to postings. Thought you might be of Swedish ancestry with your name :-). I have written many replies that seem to disappear somewhere. Forgive me if I repeat myself now.

<h4 class=”user-nicename hover-tip click-tip” title=”” data-toggle=”tooltip” data-container=”body” data-title=”Active 3 days, 16 hours ago” data-placement=”bottom” data-original-title=””>@keno</h4>
<p style=”text-align: left;”>Hi Ken,</p>
Yes, what you say about everyday functions makes sense.

Fare well

Monica

@cliffmj

Hi Mike,
I have great problems in understanding the interface of this forum. This is what I thought I published earlier but it seems it was only published on my personal page. I don’t ignore comments directed to me.

“Thank you for your reply. I see what you mean, but at least improved values are better than deteriorated values…
Take care
Monica”

 

Hi Stephanie and thank you so much for taking the time to write about your experience. I am very happy for you and it also makes me feel better about my own situation. About following doctor’s orders, there are none. I have only seen a pulmonologist once and at that time she spoke only of upcoming examinations as I had not yet had the… Read more

Thank you Meredith for your answer. I live in Sweden and I am subjected to the public health system here. I don’t know anything about a medical “team”, but my pulmonologist wrote me a letter after my last set of examinations on March 1 (HRCT, 6-min walking test and spirometry) saying that my values had improved and that I would be called… Read more

Hello all – was diagnosed with IPF in the summer of 2022 after I all of a sudden could not do anything without getting out of breath. It lasted for a couple of weeks. (There were signs of fibrosis on an Xray as early as 2919). I had a spirometry in september 2022 and a CT scan that showed characteristcs of idiopathic pulmonary fibrosis. I saw… Read more

I think we should be able to ralk about everything that is related to IPF. So please go ahead.

Hi Ron, Hope you are still doing well. Very interesting to read about your treating your reflux with prazol drug and getting such good results all over. Also I have reflux and believe it is bad for my IPF. I will buy some omeprazol but saw on the carton that it says it is for temporary treatment of reflux. How do you take them? It seems like… Read more

Good idea!