Hello Natalie,
I see your mother’s case is very similar to mine.
I am 71 yrs old and have been dealing with IPF since 2018 with Esbriet (taking only 2 tabs/day instead of the prescibed 3, because of side effects) and other helper meds, but I’m experiencing a fast downturn since last summer.
Since last Septebmer I am on O2, on a 24/7 basis… Read more

Hi Charlene, thanks for replying.

As much as I’ve searched the web for salt pipes and IPF, so far nothing relevant has popped up. The one thing I discovered was that salt (in masks, surfaces, and even as nasal washes) can inhibit/protect from all sorts of micro-organisms, including SARS-CoV-2. So I deduced that an occasional inhalation… Read more

Hello Charlene, I hope you are doing well.

I was searching the web for info on the use of salt pipes for IPF patients and found your thread! Since you’ve been using it from time to time, my question is whether there are any long-term benefits (or on the other hand, perhaps contraindications) with their use.

I have recently acquired one… Read more

Two years on Esbriet here. During first year I also was on a 3×800 dose and had permanent headaches, fatigue, reduced appetite and upset stomach. Reduced to 2×800 daily and feeling 70% better. except for the stomach part. Fatigue sometimes hits me for a couple of hours after taking the pill. So the second dose I usually take before bedtime so… Read more

Hi,

my latest CT (June 2021) scan showed no change from previous (Aug 2020) examination whereas the pulmonary function tests (spirometry, FVC, DLCO, etc) showed a moderate reduction in diffusing capacity for carbon monoxide (DLCO).

Note that some adverse “noise factors”  should be taken into account, like the COVID lockdown with… Read more

… So sorry to hear this news, Vishal.
sometimes I do wonder if there is any tangible benefit to speak of from such controversial (chemo)therapies.

Vishal,

Good to hear your Dad has improved re. GI condition.

I would not think a breathing deterioration would have ensued at such short time (2 weeks) solely from a 1/3 dose reduction. Pirfenidone is a slow acting medicament – if and when it works, depending on the individual – it gradually builds up/ or down in the body.  These periodic… Read more

Hello Vishal,

I feel very much sorry about your Dad’s condition.

I have also been on Esbriet for almost two years with similar side effects (not to mention constant headaches, fatigue and dizziness) since the beginning.

After consulting with my pulmonary MD I reduced the daily dosage by 1/3,  i.e. I take 2 800mg brown pills instead of 3;… Read more

Hi Steve

Instead of stopping altogether for a while, try trimming down the full dosage. Like taking two 800gr pills daily instead of three. That’s what I’ve been doing for the past year due to the headaches I get every day. It kinda helps. But do consult with your doctor first.

God Bless.

Hello Malcolm,

indeed every person has different reactions, symptoms and progression scale. All I can say and do is patience (we’re “patients” after all) New therapies are surely on the way, so just try to hang on there!…  It’s really beneficial to keep active as much as possible, especially if Esbriet drags you down and induces… Read more

Hello Group,

Interesting finding so many similarities but also differences between our personal IPF  journeys here. I’ve been on Esbriet ever since the diagnose last year (early 2019) with some “annoying” side effects. Fatigue, Headaches, upset stomach with some loss of appetite, occasional nausea and dizziness, some skin irritation…

I… Read more

Hello Malcolm,

sounds great you got rid of Ofev’s side-effects. I’m on Esbriet since June last year and my main complaints (after titrating and reaching full standard dose of 3 x 800mg daily in late July) were heavy stomach, slight nausea, tiredness and -worst of all- headaches. The MD recommended reducing dosage and I have finally settled for… Read more

Hello all,

Regarding @wendy-dirks immunosupressant use, it might be prudent to follow the MDs recommenndations IMHO. I have been on Pirfenidone (Esbriet)  which is also an immunosupressant, for about a year after having fought with a few side effects (tiredness, headaches and upset stomach, being the most annoying) and managed to live with… Read more

Hello Charlene,

I do agree with you this is an opporunity for ILD patients to profit from COVID19 “collateral benefits”, provided that one can keep evading the actual bug for as long as needed, but like you I am just an average layperson when it comes to technical jargon and delving into medical minutiae, so one can only hope that some benfit… Read more

Hello group,

for quite some time now I have considered there may be possible “windfall benefits” for IPF patients, coming from the COVID19 storm. In other words I was hoping for a silver lining in this bleak atmosphere, stemming from the efforts of combined internationally focused research, looking for cures and therapies for coronavirus… Read more

…thanks Charlene. After a quick search I found many Rhodiola supplements selling online, with different Rosavin milligram concentrations.

…very interesting development.

What would be the rhodiola rosea or rosavin dosage human equivalent, according to this experiment?

Hello Tom,

thanks for sharing your experience with us!.. I have read about NAC and will talk to my MD about including it in my regimen. May I ask you how you’ve managed these 2+ years with Esbriet’s multiple side effects?

Regarding vitamin D deficiency, it is a fact that most people who live in apartments in our modern cities and work 9 to 5… Read more

@steve-dragoo

Hello Steve,

thank you for sharing your homeopathy experience. Still, I haven’t quite understood whether you did initiate some allopathic treatment and then decided to terminate due to  side effects or haven’t done any at all.  I agree with your friend’s motto and would appreciate his newsletter very much, plus any link to info… Read more

@charlene-marshall

Hello Charlene,

Thank You for your welcome and kind words. Indeed this forum is a treasure trove of useful info and guidance for PF people.

Regarding homeopathy remedies, I mentioned my particular recipe mix just for information since homeo treatments are based on each individual ‘s psycho-somatic profile and tailor… Read more

Greetings forum Members!

I am a 67 y.o. from Athens, Greece and was diagnosed with IPF this past February after having dry coughs followed by breathing difficulty after exercise for about a year or so. For the time being I am taking Serrapeptase and Natokinase plus a series of homeopathic remedies therapy (in my case Sulphur and Medorrhinum… Read more