[Susan W Lyon]

Hi all,

I’m in the same situation, needing more than the Inogen G-5 can offer and finding only e-cylinders as a cumbersome and unsatisfactory alternative. I’m needing 10 lpm for any kind of activity, and an e-cylinder doesn’t last long at that rate.

Mostly, I just stay home. Grr. Let’s all keep looking and hope someone finds something better.

BTW, my AVG virus app labels the Meubon site as a malicious website.

[Susan W Lyon]

I’m interested too. I’m in Berkeley CA

[Susan W Lyon]

Charlene, yes, she is amazing. I am so very, very lucky to have had excellent and comprehensive Kaiser medical coverage through my and my husband’s jobs, and now from his pension. It’s literally been life-saving for us both.

Thank you for all you do here.

Warm regards,

Susan

[Susan W Lyon]

Hi Charlene and all,

Yes, my pulmonologist did respond. Once earlier this year, my ankles were swollen, plus my heart rate was elevated (90s) and I was coughing more. She ordered a CT with contrast (to rule out pulmonary embolism), blood and sputum cultures, a course of antibiotics, and a course of prednisone. All tests were negative, the swelling diminished, and I felt a bit better, perhaps because of the prednisone.

So, apparently, the swelling etc. can be a sign of something serious or nothing much at all, but is worth getting checked out. Hope this helps.

[Susan W Lyon]

 

Hi Charlene and all,

Every time I see her, my pulmonologist checks my lower legs and ankles for swelling because it’s a sign of pulmonary hypertension, a serious complication of interstitial lung disease. But the swelling can also be caused by lots of other things. For sure, your doc needs to be aware of it.

Susan

[Susan W Lyon]

Hi Paula and Charlene,

Thank you SO much for your really helpful relies! Sometimes when I have weird new symptoms, I feel like I’m losing my marbles, and finding others with similar reactions at least reassures me that it’s something real, even if not particularly desirable–one of the great benefits of a forum like this!

Sorry for such a slow response. Some family drama lately sucked up all my energy, which seems to fade pretty early  these days.

Starting Ofev today and hoping for the best.

Thanks again,

Susan

 

[Susan W Lyon]

Hi Charlene, Paula, Al and all,

Thanks so much for all the useful information in this thread. I also have had what seems to be an allergic reaction to Esbriet.

After a few days on the lowest dose of 1vtab 3xdaily, I developed a flat red nonitchy rash on my lower legs. I called my pulmonologist, who said keep going, but stop if the rash gets worse. The second week, the dose increased to 2 tabs 3xdaily, and within two or three days the rash was significantly worse, so I stopped. That was 10 days ago. The rash is still there. Last night I put some 1% hydrocortisone cream on it, and this morning it seems to have faded a bit.

My doctor will start me on Ofev, but for now I’m not on anything.

In the meantime, I’ve had an allergic reaction to one dose of Bactrim (for a UTI), which I’ve had many times before. In my whole long life (78 years), I’ve never had a drug-induced rash before! When the pulmonologists were sorting out whether I had hypersensitivity pneumonitis or IPF, I had a course of prednisone and CellCept. Has anyone heard of that making you more at risk for allergic responses? It all seems a little mysterious.

Just wanted to add another variation of allergic responses to the thread. Thanks again for all the helpful info.

Best regards,

Susan