[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. Try searching google for zephyrus II, pamrevlumab, Fibrogen for more appropriate links…BERT

[Bert Maidment]

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

[Bert Maidment]

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 recruitment of patients that had be on Esbriet or Ofev.  I have copied the clinical sites for Z-2 in the UK for your information. Hopes this helps…BERT

[Bert Maidment]

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

[Bert Maidment]

Relentless cough

Scary shortness of breath

Overwhelming fatigue

Life stealing no cure

BERT

[Bert Maidment]

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 your Pulmonologist to see if they could connect you with a clinical site that is still recruiting. Good luck…BERT

[Bert Maidment]

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

 

[Bert Maidment]

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

[Bert Maidment]

@steve-dragoo

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 5-30+ minutes again as I get into bed at night.  Sometimes, I cough so long and hard that I pass out, get tremendous headaches, and strain my abdominal and chest muscles. My O2 sat drops precipitously during coughing bouts (even though I am on O2 24/7).  When a coughing spat quells, it leaves me exhausted and depleted.  I have tried a lot things to suppress the cough and found that for me none of the over the counter cough suppressants work, none of the “natural” supplements or homeopathics work.  I will list the things that seem to work for me (nothing has worked 100% of the time):

– I sleep sitting up right (sometimes in my recliner)

-I concentrate or apply biofeedback techniques and controlled breathing

– I take cough medicine prescribed by my pulmonologist (promethazine/codeine – CAUTION – this is an opioid medication, discuss with your doctor). The promethazine is an antihistamine and tends to suppress postnasal drip and drippy nose: codeine is an opioid and tends to suppress coughing.

– I take pantoprazole to reduce gastric acid production and tends to reduce GERD (gastro-esophageal reflux).

– I take acetaminophen or ibuprofen for the headaches and body aches.

Even doing all these things, I still have frequent bouts of coughing, but for the most part, less intense and shorter duration which has helped me cope with the pesky symptom. Everyone is different and medicines affect people differently, so what has tended to work for me, may not work for others. Likewise, what has not worked for me, may work for others.  As an aside and meant to provide a little levity:  my cough has produced and strengthened my 6-pack Abs or so I thought. When my son reviewed my last HRCT scan he sadly reported that I did not have 6-pack Abs but he thought he saw a 1/4 Keg!  Did I mention that I am a little overweight?  My heart goes out to my fellow IPF sufferers, we need to support and care for each other. I hope this info helps someone….BERT

 

 

[Bert Maidment]

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

[Bert Maidment]

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 in front of you for take off and landing. During flight, move the POC unit from under the seat to the space between your legs because the unit needs access to air and almost needs to dissipated the heat it generates. If you keep the unit under the seat in front of you it can over heat due to the confined space and cease working (very disconcerting at 38,000 feet).  The unit will not reboot until it cools down.  5. Bring ac/dc charger with you to charge batteries in the gate area or restaurants when you can. 6. arrange for wheel chair assists with the airlines to take you to the gate and then from your destination gate to baggage and car rental. I hope this helps…BERT

[Bert Maidment]

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 24/7.  I cough intensely most mornings (I passed out one time and often trigger laryngeal spasms that impair inspiration of air). I have an incredibly supportive wife and family (with 5 grandkids) which provide a foundation of strength. Coping with this X-ing disease is exasperating. I qualified for new Phase III clinical trial of a new drug (panrevlumab) and have had 6 infusions so far over the last 6 months.  The coughing has gotten milder but it now just a nagging frustration. I go Pulmonary Rehab twice a week and can exercise (with 8 liters per minute of oxygen) fairly rigorously. I am determined NOT be defined by this disease.  I am a little crazy (as you might have expected after playing ice hockey for 47 years) so I sought out a challenge and found the American Lung Association’s Fight For Air Climb.  I decided to sign up and attempt the climb — 42 flights of stairs! My daughter and 10 year old grandson made a decision to support me and climb with me. So ,,, https://www.kmbc.com/article/<wbr />man-with-lung-disease-tackles-<wbr />fight-for-air-climb/31179883<span style=”color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: small;”>  this link will show you the results!  Now most people do the climb in 15-20 minutes, it took me an hour and 8 minutes. I paced myself with my pulsox and took many rests. I pass this on to let you know that we all can do something to challenge ourselves no matter how big or small that gives us a sense of more control of our lives.  You can still do things, just modify your expectations and be kind to yourself.  I have another infusion next Monday and will continue being a guinea pig in the hope of helping to find a mitigation for this disease…BERT</span>

ps – humor helps:  my favorite song is Stayin Alive by the BeeGees!

[Bert Maidment]

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 inhibitor (a human monoclonal antibody) from Fibrogen.  Good luck with your search!  BERT

[Bert Maidment]

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