Ron

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]

For those who suffer from coughing primarily after waking, I would urge you to give consideration to the idea you might have a condition called gastroesophageal reflux disease (GERD) on top of your IPF. GERD is often associated with IPF. It occurs most often during sleeping hours when stomach acids make their way into the esophagus and irritate…[Read more]

I do not wear a bracelet, but I should. Like others, I have considered getting one but never got around to it. I have never thought there was a stigma associated with them. In addition, I  have never thought there was a stigma attached to any medical condition. Perhaps I should consult a dictionary to be sure the word means what I think.

My…[Read more]

reply to Patricia Meadows:

Treatment with Retuximab and Prednisone

I was diagnosed with IPF in 2007 and its progress is very slow. Prednisone has never been part of the IPF treatment plan for me. I do not have the cough yet and my oximeter readings are consistently in the mid or high 90%.

However, you and I have had similar heavy doses of…[Read more]

When I moved from Colorado to Boise, Idaho I was using an Inogen G4 provided by Apria under Medicare.

While Apria has a small presence here, I quickly learned from my doctors that the favored supplier is a local multi-office company called Norco. I visit their warehouse and showroom in nearby Meridian, Idaho.

While getting things set up from my…[Read more]

Charlene,

I asked my pulmonologist if he had read or heard any more about green tea extract or EGCG as a treatment (remember at my last visit he nodded approval to try it and was aware of the NEJM article. At that time he said he wanted to know my experience at my next appointment.)

His response was rather curt. He said he doesn’t get time to…[Read more]

I experienced hair loss while taking Ofev.

I was on Ofev for about 6 months when multiple side effects showed up. I was willing to tough it out but my pulmonologist said no.

I am male, and have a healthy amount of hair. My hair is straight. No one in my family has suffered baldness going back to both grandparents.

I first noticed the hair loss…[Read more]

Charlene,

How do I get in on the survey you mentioned several times.? My results with Teavigo have been very encouraging.

On another subject: Thanks for responding to all those who have shared their stories. I  know we all would like to thank them, but it’s best if one thanks on behalf of all of us than to choke the forum with numerous thank…[Read more]

I began the extract in late April 2020. I started with two 150Mg capsules of Teavigo twice  a day (2 morn, 2 eve) for a total of 600Mg a day.

Over a period of a month I was able go from 3 lpm O2 24/7 to no O2 (4 months later I added 1.5 lpm O2 at night to my CPAP line as an an experiment and found I awoke more clear headed. This improvement was…[Read more]