I was diagnosed in 2019 with SSc/ILD and my nose has run all day, every day for a couple of years. I’ve tried every possible allergy med and spray with no luck. However, I started Ipratropium Bromide several months ago and it’s been a life-saver. I had a nose bleed when I used the prescribed squirts so I dropped down to one squirt in each…

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I love you’re attitude. My lungs are at 43 so I’m not far behind you. Keep your friend smiling.

I’ve been on OFEV for 2 1/2 years and my issues have been on and off. A couple of months ago I started eating one banana every morning and I haven’t had any issues since.

Hi Charlene.  Good idea.  I’ll check that out.  Thanks for the reaching out.

To all:  I’m a member of PF Warriors in Dallas and I think Susan is as well, and it’s awesome, but it’s not specific to Ssc/ILD patients.  Does anyone know of a group or forum specifically for people like us? It would be EXTREMELY helpful to communicate with people with our specific diseases.

Like John Scharman, I too have ILD and Limited Scl.  I was diagnosed in 2019, put on Cellcept and stable for about a year, then FVC dropped to 52 in about 6 mos. and HRCTS showed additional progression. Immediately went on both Ofev (max dose) and Rituxan infusions.  Went on oxy 2L 24/7 Jan. of ’22.  After being on Ofev/Rituxan for about a year… Read more

I’ve been using the Wellvue wrist device that has a sensor on the thumb for almost a year now, and I don’t know what I’d do without it.  I wear it all day, everyday, and even wear it at night occasionally.  I have Raynaud’s and Scleroderma so my pinky finger is the only finger that works (most of the time) with the finger-tip oximeter because… Read more

I run the tubing straight down to the floor and then lift up the machine and just go loop it around the back of the swivel leg.  Never kinks not matter how hard I pull on it.  I also use a swivel in the oxygen hose at the cannula, which just makes it easier to straighten the hose.  About 10 turns counterclockwise of the swivel and the end of… Read more

Benzonatate did nothing for me, but Gabapentin has been a life-saver.  300 mg three times a day for 2 years now and absolutely no side effects.

Natalie,

Pete is spot-on.  I have an Inogen 5 and spent about 3 months trying to figure out why my sats were dropping off with minor activity.  I finally looked up the specs and saw that at a setting of 5, the Inogen 5 only delivers a little over 1 (ONE) LPM.  It’s a shame that we patients have to figure this out on our own.  I think the… Read more

It certainly helps me.  I’m 3 years in with SSc/ILD.  I have an aggressive lung disease so I’m always looking for ways to feel better.  One of the best things I’ve done is monitor my oxygen 24/7 with a wrist pulse oximeter.  When I was on 2L (now at 3L) I tried to use a portable POC at night and found that it just doesn’t work at night.  I… Read more