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… Read more

Bedside in hospice.

Six months or more after FDA approval before Esbriet was prescribed by Kaiser/CO.

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… Read more

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… Read more

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… Read more

…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… Read more

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.

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

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… Read more

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… Read more

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.

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.

We have a “tri-wheeler” similar to this one:

— but ours doesn’t fold up as nicely.

J. in CO

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… Read more

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… Read more

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

We tried unreconstituted/organic pineapple juice…no noticeable change.

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,… Read more

Is this WEI treatment related to the Astragaloside IV (ASV) Chinese herbal derivative you reported on earlier?

https://pulmonaryfibrosisnews.com/2018/07/10/compound-from-chinese-plant-protects-against-fibrosis-in-ipf-rat-model-study-reports/#at_pco=tst-1.0&at_si=5b452836739f98a4&at_ab=per-2&at_pos=1&at_tot=2

Cheers…

J.

Marta,

These IFP info. sources range in price from $0 to US$250. Perhaps making your own list with links to the actual items would be helpful. Bionews tends to list these things over multiple web pages and not provide links to much of what they cite.

1. “Breathing Should Never Be Hard Work” by Robert Davidson… Read more

Charlene,

I mentioned earlier that Patient Services Inc. is a possible source of help.

As for Esbriet, the originator Genentech have some sort of financial relief, or so their info. I sent for/got recently hints at it (three years after my charge started on Esbriet, since apparently Kaiser never informed them of being in the “club”).… Read more

Re: cutting the cost by cutting the cord to Esbriet…thanks to Kaiser/CO!

After a two-fold diagnosis of IPF over the past four years, both by Kaiser and the preeminent lung gurus at National Jewish here in Denver, Kaiser, thanks to the recent uptick in her rheumatoid arthritis (RA) symptoms and markers, suddenly decided that my charge no… Read more

Wow!  Mr. Sherman, I’d say you’re in the right place in Ben Wheeler based on what you’re getting. My charge here in Denver under Kaiser “care” is summoned to her pulmonologist once a year, the same for the GP/NP also for her “wellness” (ahem) exam, and was not offered rehab until her IFP had “progressed” to where she was two years into things… Read more

Well, I replied to this yesterday ad nauseum, but it disappeared into a black cyber-hole somewhere.  Consider yourself spared.

To the point: try Patient Services Inc. to see if you qualify for a subsidy on your meds. under their “public insurance” category.

HTH…!

J. in CO

Hi, Charlene

OK, what’s this — newsletter, right? If not, then I don’t get a newsletter anyway and this is a forum.  Whatever this is, I can’t get a confirmation msg. when I try to enroll here using my email. It just keeps saying “nope, you need to re-request a confirmation msg.” … etc. I’d like to stop using Fb login since they’ve… Read more

Hi, Charlene

The webinar info. says:

Intended Audience: Physicians, Nurse Practitioners, Physician Assistants, Pharmacists, Nurses, and Case Managers

— not including “plain folks” like patients and caregivers. The head guy for this webinar, Dr. Cosgrove, CMO at National Jewish, is known to most with respiratory issues here in the Denver… Read more

I think it’s strange and sad the PR isn’t a “given” for IPF.  We here in CO had no idea that it was an integral part of IPF treatment, and her provider Kaiser/Permanente never advised her or offered it until two years after her diagnosis and a new and more competent pulmonologist (“What?? You weren’t told about pulmonary rehab?? Oh,… Read more

We use the Salter “high-flow” (1600HF-7), but not because it reduces runniness but because it has proven quieter at night running 6L/min. Again, anecdotal. There’s still runniness, and I’d suspect anyone with the concentrator’s optional in-line humidifier flask would have the runniness problem as well.  We tried it for O2 that was drying out… Read more

Related to this topic, I’ve tried two different sign-ups to this forum, been told that a confirmation email was on the way to my registered address…nothing ever shows up. That, in spite of repeated re-requests for another confirmation email.  And yes, I’ve checked my junk, my two alternative email addresses, looked under the couch, etc. … Read more

As a back-to-basics question: why is prednisone prescribed in the first place?

With the caveats about avoiding sun exposure that come with Esbriet and living in Denver where sun is frequent and strong, we (I’m a caregiver for Milady who has IPF) loaded up on sunblock clothing (which she rarely uses…) and are on a calcium supplement containing 1,000 IU’s of D (most calcium supplements have D to aid assimilation). I… Read more