Bert Maidment

I was in the Zephyrus 1 (Z-1) trial which has just completed protocol enrollment. I finished the first year (placebo versus pamrevlumab) and am currently in the following on Open Label Extension (OLE) phase.  Those subjects in Z-1 study have the option to participate in the OLE phase which administers pamrevlumab every three weeks by IV infusion.…[Read more]

Jeff – the data are blinded so no there are definitive results available yet. We have to wait until the trials are completed and data unblinded snd analyzed….anxiously awaiting BERT

Sorry for the typos in previous response :  subjects in Z-1 did not have previous treatments with Ofev or Esbriet.  Z-2 subject can have had been on Ofev or Esbriet.  The table of recruitment site is England did not post.  Check the clinicaltrials.gov site for NCT04419558 for clinical sites…BERT

Jeff – There are two ZEPHYRUS clinical trials: Z-1 is closed (no longer recruiting: target number of subjects has been achieved) and Z-2 is still recruiting. Check the following links for more information:  http://www.fibrogen.com  and http://www.clinicaltrials.gov  (NCT04419558).  Z-1 recruited patients that were previously with Esbriet or Ofev. Z-2 allows rec…[Read more]

Relentless cough

Scary shortness of breath

Overwhelming fatigue

Life stealing no cure

BERT

Jeff – I am in the Phase 3 clinical study for Pamrevlumab sponsored by Fibrogen. It is not FDA approved yet, the NDA will probably be filed in a year or so after the second Phase 3 study is completed and the data compiled and analyzed. Since FDA approval pending, it can’t be sold so I would be very leery of anyone claiming to sell it. Check with y…[Read more]

I use AYR (saline with aloe) for the nasal issues: it softens the crusty build up so that after a while you can blow your nose to eject the crusty build up and open up the nasal passages for easier breathing … also quells nasal bleeding.  I hope this helps others …. BERT

I use AYR (saline with aloe) for the nasal issues: it softens the crusty build up so that after a while you can blow your nose to eject the crusty build up and open up the nasal passages for easier breathing … also quells nasal bleeding.  I hope this helps others …. BERT

Steve – You can add me to the long list of IPF patients with pesky, persistent, exhausting cough. I was diagnosed with IPF 3 years ago however my cough had plagued for years before that.  Now my cough starts in the morning a few minutes after waking up and can last 5-30+ minutes with some phlegm production, spats of coughing through the day, and…[Read more]

Steve – The airlines (United in both cases) stipulated window seat.  I guess you can always ask to be assigned a middle seat although their rationale is that no one would need to crawl over you in case of an emergency if you are in window seat. Business class? First class? What is that?  Save travels, BERT

Steve – Regarding flying with a POC.  I have flown a few times with my POC. 1. you need FAA approved system 2. you will need to show the ticket agent at the airport that you have sufficient battery life for 1 1/2 times of the estimated flight time 3. you will be seated in the 2nd or 3rd row window seat. 4. POC unit should be stowed under the seat…[Read more]

I was diagnosed with IPF almost three years ago, however, I suspected that something was wrong due to shortness of breath climbing stairs in our 3 level townhouse and trying to get back in shape to play ice hockey again (I just couldn’t get going and I thought it was just that I was really out of shape).  I have one floor living and am on oxygen…[Read more]

The federal government website, clinicaltrials.gov an, a search for idiopathic pulmonary fibrosis.  The site list current and past clinical trial phases I, II and III.  Additional search terms or sorting (i.e., recruiting) can focus the list to your interests.  I am on a Phase III clinical trial of pamrevlumab, a connective tissue growth factor in…[Read more]

This has happened to me also, a number of times. I would think the function does not work….BERT