Roger Cummins
Forum Replies Created
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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.
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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.
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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 without noticing any difference, I started to notice improvements in my everyday “lung function”, meaning I didn’t cough nearly as much, everyone said I sounded much better, and then I noticed I could stay off of Oxy during the day as long as I was just slowly moving around the house. After my lung tests at Baylor-Dallas a couple of months ago, my FVC and FEV1 were up about 6%, but my DLCO had increased from 60 to 86. My lung doctor was extremely excited. The DLCO improvement is probably why the lungs are “working” better lately. She pretty much had no answer for why the improvement. I understand that things can, and will change, but just know that improvement (even if not permanent) is possible.
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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 of low perfusion, but the Wellvue on my thumb pretty much works all the time. When both of them are working they’re reading close to the same number. I love that it downloads and saves an hourly graph every day in the app. Especially helpful is the vibration feature that triggers when it reaches the O2 level you set in the app. That allows me to increase my oxygen when I’m running errands or whatever. Again, I’d be totally lost without this. I thought about the ring type buy I think it would get in my way too much. Hope this helps.
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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 the day and it straightens out.
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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.
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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 had periods where my O2 dropped into the 70’s and also the “no breath” alarm would go off. Turns out that sometime during the night I’ll start breathing through my mouth. Now I use a face mask, and since I was already used to sleeping on my back (because of night cough early on), and now I only use my constant flow oxygen concentrator. No more O2 problems at night. Hope this helps’
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This is interesting. I’m on Ofev/Myco/Truxima for ILD and Sscl. I had numbness and tingling in my right thigh for about a month. Then I noticed occassional sharp pains and attributed all this to a pinched nerve. However, now my thigh is just tender, like what you’d have with a bruise. Anyone else with something like this?
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Hi Charlene. Good idea. I’ll check that out. Thanks for the reaching out.
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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 manufacturers of the POCs know exactly what they’re doing when they use the same numbers that the continuous flow devices use, thus leaving us to believe these are LPMs. Practically everyone I talk to (nurses, doctors, etc.) thinks these numbers are LPMs. The manufacturers should be required to use something other than the 1-5 numbers. . . . . like maybe A,B,C,D,and E. That way SOMEONE would have to tell us what they mean, or we’d have to look up the information. It appears to me the manufacturers don’t want you to find this out until you’ve forked over $3k to them. Sorry I got so lengthy. . . . .but this issue hits a nerve.