The cost of Jascayd with no assistance is 16000 and change. My ins denied me twice so I’m just on Ofev. There is a program out there, careconnect4me, that may help you. They wanted to send me the drug for free and they did, I did not open it because my dr wanted me to wait and see what my ins was going to do, I don’t think he wanted me to…

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I am on medicare however we get our drugs from my husband’s former union, free for life as long as they are in the formulary, which this is not. They are going to make me jump through the hoops of trying Ofev or Esbrit

Just heard from my ins co, they won’t pay for it. I’ll appeal but we’ll see. I don’t have high hopes.

Hi All,

I was prescribed this by my pulm yesterday. I am awaiting insurance approval, it’s a tad pricey. I will not start it until I get back from a vacation that is planned two weeks from today. I will be replacing mycophenolate which isn’t doing the job anymore. I was diagnosed 3 years ago, probably had it for 2 years before that, I have…

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Camila, I too use that 5 lb concentrator when I go out or exercise. I cannot use it in the original bag it came in, I can’t have that weight hanging on my shoulder. I bought a backpack from Amazon which is designed for concentrators, made a world of difference for me!

Hi Laura, I too have RA induced ILD, specifically NSIP (my rheumy thinks its UIP but my pulm is pretty definite on the NSIP, I’m sticking with that as NSIP is better than UIP from what I’ve read). This journey began 3 years ago. I’m doing really well at the current moment, I douse portable oxy concentrator when I exercise or go on long…

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My chronic cough is a gift from my ILD, specifically NSIP, for this the pulmonologist has me on a low dose of amitriptyline, it has done wonders for my cough but he advises me that nothing will take it away completely. I’ve been on GERD meds for 7 years now, 4 years before the ILD started.

This post really spoke to me! I was recently contacted to do a blind trial for an inhaled form of Esbrit. I thought sure, I’ll do that, then the details, two weeks in a row, one day each week at a hospital downtown, 7 hours a day and that’s an hour away for me Then every six weeks, for a year, another day downtown for 4 hours. This is a…

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Hi Millie, first of all, your Inogen is not oxygen, it’s an oxygen concentrator, it magically makes oxygen from room air. I do not believe you can fly with regular oxygen tanks. My unit has been to more countries than most people. I no longer contact the Airlines as they are all used to this but if you are using it in the cabin, you may want…

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I take Actemra infusions since I was diagnosed with IPF from RA, I was taking Humira shots before that. At this point I think I’m stable, I see my dr next week. I’m a little afraid of Rituxan, I’ve had Ra for 25 years and I’ve read about them all and taken some of them.

Every time I take the PFT they always add the albuterol and it never make a lick of difference. So, no, I am not on that.

I have ILD with Fibrosis, Five years ago we bought a new home, before diagnosis, we have a vented gas fireplace, it’s one of my favorite things in the house, I love sitting near it, it has not affected my lungs.

Thank you, Malcolm, I’m going to print this information for the rare instances that I can’t control the cough. Since diagnosis, two and a half years ago, my DR has me on amitriptyline, it’s a low dose antidepressant that is a low enough dose for cough but too low for depression, has made a significant change in my coughing, I take 3 pills a…

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