[Rob]

I’m being screened for a Phase 3 Fibroneer trial.   My doctor is also considering an inhaled Teprostinil trial.  Has anyone had any experience with either of these drugs?

Stay well.
Rob

[Rob]

Hi Theresa

I have IPF and take Esbriet.  Also Serrapeptase seems to help.  For nasal congestion I use Omnaris and also saline sprays.  For lung congestion I’ve been inhaling Mucomyst(Acetylcysteine) with a nebulizer for the last 3 years and it has helped greatly.
Stay well.
Rob

[Rob]

Hi Jim

IPF sucks. I was diagnosed 5 years ago(at 55) and have been on Esbriet for 4 years.  Very little lung decline????.  Initially had some stomach upset and sun sensitivity lasted a bit longer but now manageable with sunscreen(mostly on hands) and a big hat when I golf.  No idea if Esbriet  has helped but will definitely will continue taking it. You might want to try Serrapeptase as well.
Stay safe.
Rob

[Rob]

Has anyone had experience taking quercitin? Supposed to help immune support, respiratory health and now many people have started taking it that have covid.
Stay well.
Rob

[Rob]

I got a third vaccine last week on the basis that Esbriet(and I assume Ofev as well) is an immunosuppressive therapy. My doctor signed my region’s(Halton,Ontario) vaccine referral form and I got the shot at a pharmacy the next day. Previously I had a  COVID spike antibody test to check my immunity from the vaccine(AstraZeneca in March and May. Just got Pfizer) and it was good at 1400(wife was 1700 and daughter(20) was 2500). Got the blood test at home from Dynacare.
Stay safe.

Rob

[Rob]

I used to have a phlegmy cough every morning but it has virtually disappeared since I started inhaling Acetylcysteine solution by nebulizer twice a day for 10 minutes. That was on the advice of Dr David Schwartz in Denver who is a top IPF researcher. Acetylcysteine may be called Mucomyst in the US.

Stay well.
Rob

[Rob]

Just letting you know that if you are on Esbriet(and I assume Ofev as well) you would qualify for the 3rd vaccine dose on the basis that it is an immunosuppressive therapy. Your doctor needs to fill out and sign your region’s vaccine referral form and then you can book the appointment.  I called Shopppers and got my shot the next day.
Be safe

Rob

[Rob]

I’ve been taking Esbriet for 3 years. About a year after being diagnosed with IPF. My pulmonologist started early because I had other immediate family members with IPF. Some early stomach issues and sun rashes that have subsided and still seem to have trouble sleeping. Little drop in lung function?.

I was recently changed to generic Esbriet(Sandoz). Has that happened to others and do you notice any difference?

STAY WELL

[Rob]

I had some itchy skin and rashes(from the sun) when first taking Esbriet but they definitely diminished over time. I still have a sunscreen stick to rub on the back of my hands when driving or golfing.

[Rob]

Dr David Schwartz at University of Colorado Medicine.

[Rob]

I’m not in a trial but Dr Schwartz has a group in Denver inhaling Acetylcysteine(NAC) and got my pulmonologist in Canada on board. I’ve been inhaling 8ml by nebulizer for 10 minutes twice a day for 2 years. My lung congestion is greatly improved and if that is an issue for you I would recommend it.

Stay well

Rob

[Rob]

Hi Charlene

No Tyvasco experience but I inhale liquid Acetylcysteine twice a day and take Esbriet. Noticeably less mucous and relatively stable.  ?Recommended to me by Dr David Schwartz in Denver who is a top IPF expert.
Be well

Rob

[Rob]

Thanks for the replies. Looks like we got an appointment for Friday.  ?

[Rob]

Thanks John.  Organ transplant is on the list and I’m just worried the doctor’s letter stating IPF is highest risk won’t get be enough.

[Rob]

I have IPF and have spent the last year at home. I just received my first AstraZeneca shot.  In the Ontario guidelines it says that people in the highest risk category and a caregiver can qualify for a vaccine in some areas. Of course IPF isn’t on the list but I have a doctor’s letter stating I’m at highest risk and my caregiver has a letter as well because they would not currently qualify otherwise. Has anyone had experience getting someone vaccinated based on being your caregiver? We would hate to show up and get turned away.    Stay well!

[Rob]

Agreed my nasal congestion is especially bad this year.  Spraying up my nose with full stream saline spray(I use Hydrasense) helps me a lot.

[Rob]

Thanks to great support from all readers my wife’s book, The Jane Austen Society, has been at the top of the Toronto Star and Globe & Mail’s Canadian bestseller list for the last 2 weeks and #7 on the LA Times hardcover bestseller list. We’ve been able to support the Firestone Institute for Respiratory Health’s COVID Response Fund as a result.
Thank you and stay well.

Rob

[Rob]

P.S.

A portions of sales from the book are being donated to the Firestone Institute for Respiratory Health in Hamilton.

[Rob]

My wife and I opened a small bookstore in late 2015. Four months later I was diagnosed with IPF so at the end of 2016 we shut down the store to focus on bucket list trips and my health. After our Tuscany and my golf trip she went to visit Jane Austen’s(her fave author) home in Chawton, UK and that trip became the basis of her first published novel. The Jane Austen Society by Natalie Jenner is released today in North America and May 28 in the UK and abroad. The book has been featured in the New York Times, CNN, Today and People Magazine called it “sweet, smart escapism”.  Thankfully I’ve been fairly stable on Esbriet and I hope you all stay well in these difficult times.

Rob

[Rob]

I take Zinc, Vit C, Vit D and Oregano Oil daily for immune boosting.  I wear a device called an Airtamer(bought on Amazon)  whenever I’m in public near other people.  It’s supposed to repel germs and I believe it works.  I always have an individually wrapped medical mask with me if I’m in a train, theatre…  I’ll put it on if people near me are coughing.

Stay well

Rob

[Rob]

Hello Ruth

My mother had IPF and she believed NAC helped her.  I also have IPF and was told by a top researcher(Dr David Schwartz- just got a $10 million IPF research grant)that NAC in pill form shown little effect but recommended I inhale the liquid form(Acetycysteine or Mucomyst) by nebulizer.  I had a terrible persistent phlegmy cough that has virtually disappeared in the 2 years I’ve doing this and very little IPF progression(?).  I take Esbriet as well and recently added Serrapeptase.

Good luck

Rob

[Rob]

All good precautions.

We also turn the air vent on high.

I wear a device called an Airtamer A310(available on Amazon) when I’m on a plane , train, in a theatre or any crowded place.  I know people who fly frequently that swear by  it but who knows.

Stay well

Rob

[Rob]

Thanks David ( @davidaswain ).  I’m currently taking 240,000 but may try to bump up.  Do you always take it on an empty stomach?

Rob

[Rob]

I am taking Esbriet for IPF but had developed frequent and painful sinus congestion recently.  I started taking Serrapeptase(along with saline spray)to help that problem but I do believe my breathing has improved as well.  I’m normally a skeptic about supplements but would like to hear other IPF patients response to Serrapeptase.   Rob