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Jay Turbes-s replied to the topic how long can you take Esbriet? in the forum Esbriet (Pirfenidone) 2 years, 11 months ago
David,
All that I’ve read says that you can continue as long as your dr. thinks there’s a benefit. There are recent studies that seem to show that Esbriet combined with Ofev is also more beneficial than Esbriet alone (can’t speak to whether Ofev benefits by adding Esbriet). If your forced vital capacity doesn’t deteriorate too far, Esbriet is…[Read more]
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Jay Turbes-s replied to the topic How Do You Plan On Recognizing Rare Disease Day? in the forum Pulmonary Fibrosis Awareness & Advocacy 2 years, 11 months ago
Bedside in hospice.
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Jay Turbes-s replied to the topic Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts 2 years, 11 months ago
Six months or more after FDA approval before Esbriet was prescribed by Kaiser/CO.
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Jay Turbes-s replied to the topic Pulmonary Rehab May Improve Exercise Capacity and Quality of Life in IPF Patients in the forum Flash Briefings & Podcasts 3 years, 7 months ago
Charlene,
When we learned about rehab. and that it was recommended IPF treatment, it was already the third year after diagnosis and she felt that it was futile to get involved. I’m sure that had it been offered right from the get-go she would have done it (or anything!) to fight IPF. Three years later, she had resigned herself to the inevitable.…[Read more]
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Jay Turbes-s replied to the topic Pulmonary Rehab May Improve Exercise Capacity and Quality of Life in IPF Patients in the forum Flash Briefings & Podcasts 3 years, 7 months ago
Being totally new to the IPF adventure four years ago, we knew nothing about pulmonary rehab. back then. It was three years later and thanks to the Pulmonary Fibrosis Foundation’s website, the European IPF Rareconnect world forum and others when we finally realized that part and parcel of IPF care was rehab.
We asked Kaiser/CO about this thing…[Read more]
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Jay Turbes-s replied to the topic Clinical studies of GLPG 1690 and BG00011 in the forum Clinical Trials 3 years, 7 months ago
Hi, Charlene,
We’ve contacted National Jewish directly and found that a referral from our Kaiser doctor is not required. That was what I assumed from the clinicaltrials.gov info.It was interesting to hear what they had to say about Kaiser/CO — we apparently aren’t the first Kaiser defectors, and their feedback ‘twarn’t pretty!
But there’s more…[Read more]
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Jay Turbes-s replied to the topic Clinical studies of GLPG 1690 and BG00011 in the forum Clinical Trials 3 years, 7 months ago
…and after attempting to apply to participate in the GLPG 1690 trial here at National Jewish and being informed that we would need a referral from our regular pulmonologist at Kaiser/CO, who has refused to give it. She cited her opinion that Kaiser’s original diagnosis of IPF was a misdiagnosis and so Milady is not a candidate — this in spite…[Read more]
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Jay Turbes-s replied to the topic Nosebleeds: A Side Effect of Pulmonary Fibrosis Medications? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 7 months ago
Charlene,
Milady’s nosebleeds aren’t that frequent, so she uses the saline spray mostly to keep congestion in check and to relieve any dryness from the O2. She’s also tried applying peanut oil (?) that she read was good in one of her metaphysical books…mine is not to reason why, just provide support 🙂
J.
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Jay Turbes-s replied to the topic Nosebleeds: A Side Effect of Pulmonary Fibrosis Medications? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago
Dunc,
Yes, we did the “half full” thing with the distilled water too. I think because Milady is upstairs and the concentrator is down in the family room with mucho tubing in between, it still results in being messy. Coping with the dryness and preventing scabs with veggie oils seems to be more “do-able” than hassling with that bottle.
Cheers!
J. in CO
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Jay Turbes-s replied to the topic Flash Briefing: IPF Patients Switching to Esbriet to Ofev Stopping Treatments, Possibly Due to Low BMI in the forum Flash Briefings & Podcasts 3 years, 8 months ago
Milady’s Esbriet regimen had virtually no ill side effects and also seemed to keep her appetite in check. The result was a welcome loss of weight as one beneficial side effect. Then a year ago, her cost-cutting HMO (Kaiser-P.) decided to put her on prednisone instead of Esriet, mumbling something about “misdiagnosis” — in spite of the premier…[Read more]
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Jay Turbes-s replied to the topic Nosebleeds: A Side Effect of Pulmonary Fibrosis Medications? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago
Like Suzanne, Milady here in Denver would have occasional nosebleeds, with or now without the Esbriet. Besides being low humidity here (usually…it’s been pretty soggy of late) the O2 is quite drying. And adding the humidifier bottle to the concentrator just makes things messy and clogs the line with condensation. So she just uses saline nasal…[Read more]
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Jay Turbes-s replied to the topic Clinical studies of GLPG 1690 and BG00011 in the forum Clinical Trials 3 years, 8 months ago
There is one recruiting trial on Clinical Trials.gov for BG00011:
https://clinicaltrials.gov/ct2/results?cond=&term=BG00011&cntry=&state=&city=&dist=
Note that application can be made through any of the Clinical Trials.gov listings, or at least there’s info. on how one proceeds with the application.
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Jay Turbes-s replied to the topic Clinical studies of GLPG 1690 and BG00011 in the forum Clinical Trials 3 years, 8 months ago
ClinicalTrials.gov lists the GLPG 1690 trials in two specific locations:
https://clinicaltrials.gov/ct2/results?cond=&term=GLPG+1690&cntry=&state=&city=&dist=
— there are others, but not related specifically to IPF treatment.
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Jay Turbes-s replied to the topic Tips for Carrying Multiple Items as a Patient with PF. in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago
We have a “tri-wheeler” similar to this one:
— but ours doesn’t fold up as nicely.
J. in CO
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Jay Turbes-s replied to the topic Hearing Others' IPF Story: Pros & Cons. in the forum Caregivers and Spouses 3 years, 9 months ago
Charlene, Katie, et al
I’m a caregiver and not afflicted like Milady here. She and I don’t talk about what she’s dealing with daily, or inevitably. And that’s a shame. But I’m too much of a coward to bring it up. When the one or two people I know ask, as they always do, how we’re doing, I lie and say “great”. Or in more truthful moments,…[Read more]
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Jay Turbes-s replied to the topic Hearing Others' IPF Story: Pros & Cons. in the forum Caregivers and Spouses 3 years, 10 months ago
Charlene,
It’s sad that this person “dumped” on you about her husband’s IPF battles (and her own agony). By now, you must have encountered similar chance encounters, and I would surmise that they all are either attempting to be sympathetic or think they’re establishing some sort of rapport. Few of us have much on which to base our daily lives of…[Read more]
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Jay Turbes-s replied to the topic Tips On Caregiving & Chronic Illness in the forum Caregivers and Spouses 3 years, 10 months ago
Charlene…
The Cleveland Clinic has a number of caregiver-related articles there. Is there a particular one you had in mind?
Thanx…
J. in CO
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Jay Turbes-s replied to the topic Natural Relief for Mucus in the Lungs? in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 10 months ago
We tried unreconstituted/organic pineapple juice…no noticeable change.
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Jay Turbes-s replied to the topic Emergency Preparedness When Using Supplemental Oxygen in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 11 months ago
Here in CO, we’ve had a few power failures that made us depend on the backup liquid O2 reservoir. But more often, our concentrator has simply given up the ghost as recently as last week, though that isn’t a common occurrence. I know that liquid O2 isn’t an option in a lot of places; when I asked our Kaiser-P. contracted supplier, theoretically,…[Read more]
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Jay Turbes-s replied to the topic Diet additions that might help AND WEI Institute cure claim – really? in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 1 month ago
Is this WEI treatment related to the Astragaloside IV (ASV) Chinese herbal derivative you reported on earlier?
Cheers…
J.
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