Ron

Stuart,

I started taking Teavigo green tea extract soon after an article about the study appeared in the New England Journal of Medicine. That was around Feb-Mar of 2020. The study participants were taking 600MG daily. I am taking 300MG daily. My IPF as been stable. I had a CTscan and PFT in April. The CTscan showed no disease progress over the…[Read more]

from what I have learned, and what is somewhat confirmed by various poster here, it is rarely found to run in familys. I know there is no known lung disease of any kind in my parents, my grandparent or cousins. Likewise with my adult children.

No one in my family  has been tested for IPF because of my IPF. I have had IPF since 2007 and have yet…[Read more]

Based on what I have read here in the forums and what my own doctors have told me, the consensus seems to be that if the oxygen saturation measured with a pulse oximeter is in the 90%-100% range there is no need for oxygen supplication. Anything below that (my pulmonologist said 88%) then getting supplemental  O2 is advised.  However, there are v…[Read more]

I should think you would have no problem if you signed up for the vaccine at a facility (hospital, clinic, etc.) where you have been treated for IPF or any other condition where your IPF would have been noted in your medical record. If you have IPF you are at high risk if you contract Covid 19.

I am in the US. I served in the Navy for four years…[Read more]

I feel I am coping well. However, it was not always that way.

I was diagnosed with IPF Way back in 2007. At that time very limited reference was found on the internet, but all of it was bad. Life expectancy was in the 2-5 year range. The pathologist report accompanying my first CTscan indicated it appeared to be old, inactive scarring.  For the…[Read more]

Thanks Pete,

Yes, apparently the earlier post was deleted causing a disconnect with yours. I did misunderstand. Thanks for the clarification.

Fluticasone propionate, sold under the brand names Flovent and Flonase among others, is a steroid medication. It is available as a retail over-the-counter product. I found it is cheaper by prescription unless you have to pay your doctor $100 in order to see him and get a prescription. Other brands, including Equate are also available. Check the…[Read more]

Keeping hydrated is certainly a good thing but doubt it has more than a minimal effect on keeping your nasal passages moist.

Humidity probably plays the biggest part in keeping them moist. Also, altitude could play a part. When I moved from near sea level in Maryland to 6500 and later 7000 ft elevation in eastern Colorado in 1990 I suffered…[Read more]

Pete Besio:

I don’t think anyone here has fallen for a “miracle cure” pitch. We were actually astonished that such a small study made it into the prestigious New England Journal of Medicine. I think the reason it did appear there is that it was conducted by a legitimate group, involved serious metrics, and had such good results. It is my hope…[Read more]

Hello William,

I will try to answer your query and a few others in subsequent posts to yours.

I am 80 years old, a widower, and live in Boise, Idaho. I moved here from Colorado in January 2020. Am a veteran and never used VA health services. On Medicare Advantage insurance. Diagnosed IPF in 2007. Followed up for 3 years until 2010 with CT…[Read more]

Need help paying for Esbriet (pirfenidone) or Ofev (nintedanib)? Consider contacting Healthwell Foundation http://www.healthwellfoundation.org. Perhaps you are like me. My Social Security payout disqualified me for any state or federal assistance. If your insurance plan (Medicare, private insurance, etc.) doesn’t cover all of your drug costs then…[Read more]

James,

You are so lucky to have the desire and talent to play the dobro and enjoy playing others. I lost my sense of rhythm due to a stroke before I was able to learn an instrument but I definitely enjoy listening and dobro or resonator are my favorites to listen to. They really add “color” to the sound of a band.

I can say that music is what…[Read more]

Mark,
Thanks so much for beginning this thread. I have been following this forum for at least two years and there has been a lot of great info shared. Breathing techniques have not been extensively discussed to my knowledge.

You started a thread which I think will help all of us understand this aspect of rehab much better. Thanks for bringing…[Read more]

Jim Nox

I wish it were a better report too. It’s essential that we not think of green tea extract as a magic elixir to cure all IPF at this point. It appears to be a perfectly safe product with several proven benefits other than for IPF. So there little to lose and much to gain for those with IPF who experience benefits.

Researchers have yet to…[Read more]

Greeting Catherine,

Just a quick note to point out that the “ground-glass” effect is not a primary indicator of IPF. You are probably thinking about the “honeycomb” effect.

It can get confusing because while a ground-glass appearance sometimes shows on CTScans of IPF patients, it also appears with several other conditions. Also, when healthcare…[Read more]

13 years with IPF. Very slow progression. No treatments although we tried Esbriet and Ofev briefly in 2016. Side effects forced the end of treatments.

No clubbing on hands but feet have weird shapes on toenails. Had surgery by a podiatrist about the time that my IPF was discovered. My big toes had ingrown nails. Podiatrist cut back the side edge…[Read more]

I have not had a discussion with my pulmonologist or primary care physician regarding treating pain as I do not suffer it much at all. Sometimes the intake nurse at a doctor’s office will ask if and how often I take anything for pain and I tell her I take acetaminophen (Tylenol) for most types of pain and a topical gel containing capsaicin for…[Read more]

Timothy,

I think you have your answer. I have not heard of Breo as a treatment for IPF. Since pneumonia is a side effect I would be very careful to take deep breaths often to clear my lungs and avoid aspirations of food or drink.

You always have the choice to discontinue Breo should you feel compelled to do so. That’s certainly something to…[Read more]