@obleek
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Rob replied to the topic Congestion in the forum Ofev (Nintedanib) 5 months, 3 weeks ago
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 replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 10 months, 1 week ago
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.…[Read more]
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Rob replied to the topic Supplements in the forum Living with Pulmonary Fibrosis: 50+ 11 months ago
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 replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 6 months ago
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. Ju…[Read more]
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Rob replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 6 months ago
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 -
Dennis Broetzman and
Rob are now friends 1 year, 6 months ago
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Rob replied to the topic Getting the Vaccine in Ontario in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 6 months ago
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 safeRob
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Rob replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 1 year, 7 months ago
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 E…[Read more]
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Rob replied to the topic Itchy Skin with Esbriet in the forum Esbriet (Pirfenidone) 1 year, 7 months ago
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.
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Rob replied to the topic Tyvaso for IPF in the forum Clinical Trials 1 year, 11 months ago
Dr David Schwartz at University of Colorado Medicine.
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Rob replied to the topic Tyvaso for IPF in the forum Clinical Trials 1 year, 11 months ago
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
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Rob replied to the topic Tyvaso for IPF in the forum Clinical Trials 1 year, 11 months ago
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 wellRob
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Rob replied to the topic Getting the Vaccine in Ontario in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 11 months ago
Thanks for the replies. Looks like we got an appointment for Friday. 🤞
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Rob replied to the topic Getting the Vaccine in Ontario in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 11 months ago
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.
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Rob replied to the topic Getting the Vaccine in Ontario in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 11 months ago
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…[Read more]
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Rob replied to the topic Trying to Win the Battle Against Allergy Season in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 8 months ago
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.
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Rob replied to the topic Book Club in the forum Hobbies & Projects 2 years, 9 months ago
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.…[Read more]
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Rob replied to the topic Book Club in the forum Hobbies & Projects 2 years, 10 months ago
P.S.
A portions of sales from the book are being donated to the Firestone Institute for Respiratory Health in Hamilton.
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Rob replied to the topic Book Club in the forum Hobbies & Projects 2 years, 10 months ago
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 n…[Read more]
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Rob posted a new activity comment 2 years, 11 months ago
Have you looked at genetic testing. My family is lousy with IPF as well and the genetic test gave me some info.
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