@carlo
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Stephen B. Strum, MD posted an update 2 months, 2 weeks ago
@carlo
Hello, Carlo. I do not have IPF but am a physician working with a patient diagnosed recently diagnosed with IPF. He has been on pirfenidone (Esbriet®) for about 5 months. I wonder how many of those who have had at least 6months of pirfenidone have had stabilization of their diffusing capacity or FEV or any clinical improvement. -
Charlene Marshall replied to the topic Inhaled Therapies for IPF in the forum Diagnosis Information and General Questions 2 years ago
Hi @carlo,
Thanks for your comments and kind words! I appreciate hearing a bit of your story and glad you found the forums. I am biased but believe the people on this site are amazing, and always willing to help so I have no doubt you will find some great information here.
I also have been prescribed Spiriva (the Respimat version of the inhaler)…[Read more]
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Steve Dragoo replied to the topic Inhaled Therapies for IPF in the forum Diagnosis Information and General Questions 2 years ago
Hi Carlo,
Welcome to the forums.
I was diagnosed in October 2016 while in Manila and take no meds (yet) just a bunch of supplements. I can suggest you look at all the pros/cons of the medications and discuss them with your doctor. Have you been diagnosed with anything else like COPD? We are all so very different with additional i…[Read more]
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Charlene Marshall replied to the topic Getting the Vaccine in Ontario in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 2 months ago
Hi @carlo
I’m so glad you were able to register and are getting your vaccine today by the sounds of it! I helped my friend’s Mom register in York Region last week and it wasn’t a terrible process. She also said getting it was quite smooth, so I hope yours goes well today. I have my second one booked for the end of June, so it seems as though…[Read more]
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Charlene Marshall replied to the topic Increased Throat Clearing in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
Hi @carlo,
Good question and I think it is important to clarify: I do not know if increased throat clearing could be caused by disease progression. It actually seems a bit better now for me than it did when I wrote this post, so that leads me to think it was due to something else like allergies, a virus, etc. It’s a good question I want to ask my…[Read more]
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Christie Patient replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years, 2 months ago
Hey @Carlo that’s not bad at all! 2.8 mph is a really healthy pace. 🙂 And I think if you tracked your steps throughout the whole day (fitbit, or pedometer) you would be surprised at how many you take outside of dedicated exercise time. That said, I also think it’s great that you’re committed to 40 minutes 3 times per week. Keep up the good work!
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Denny posted an update 2 years, 3 months ago
@carlo it was because of both but I was still doing well with the rinks shut down with COVID.
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Steve Dragoo replied to the topic Dizziness and IPF in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 5 months ago
Hi Carlo,
Have you checked your BP under various stresses on the body? Has your pulmonologist looked at possible PAH (pulmonary artery hypertension)? Two possible issues as IPF develops. Many don’t have these problems so it may be as you suggested the Esbriet.
Stay well,
Steve
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Charlene Marshall replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 5 months ago
Thanks so much for sharing this @carlo ! For those who reside in Ontario, it is very helpful information and it may guide others in various provinces, or even states, to find out what their area is doing in terms of the vaccine roll out. I appreciate you taking the time to share this with us.
Sincerely,
Char. -
Charlene Marshall replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 5 months ago
Hi @carlo,
I’ll send you a direct message about where home is for me, you’re probably familiar with the area! 🙂
The background in my picture is the Sydney Harbor Bridge in Australia. I climbed it in 2015, it was so thrilling and one item I was very proud to cross off my bucket list. As you can see, the next time I returned to Australia was with…[Read more]
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Charlene Marshall replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 5 months ago
Hello @carlo from a fellow Canadian!
Sounds like MacKenzie Hospital is similar to the UHN. They just released a statement as well, saying they don’t yet know when those with chronic conditions, including respiratory and/or transplant patients and recipients will receive the vaccine. It sounds like the process is similar in many places: those at…[Read more]
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Steve Dragoo replied to the topic results experienced after Wei Labs products usage in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 6 months ago
Hi Carlo,
I wanted a maintenance dose (1 – 3 months) about 9 months ago but until a few days ago they (WEi) could not ship over here.
WEi definitely helped but my results are subjective as I have had no tests or screenings for 20 months. My stamina and strength improved and I have flown several times with no O2.
So I want the…[Read more]
I have been on Esbriet since September 2020 ( switched to generic in 2022, not sure of exact date ) when I was definitively diagnosed with IPF. There was evidence in prior CT scans, being done as a result of lung cancer diagnosis and VATS lobectomy surgery in 2012, as early as 2015.
My FEV has been very stable since 2015 with an apparent…[Read more]