It’s all really disappointing that these companies don’t just come out and say exactly what their machine puts out in liters! I was hoping I could get one that I could carry so I could go for walks without having to wheel something around since I live in the country with gravel roads and driveway. I’m using 1.5 liters now. I just got the…

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I too am needing a POC. I just got a concentrator for home use but need to do the 6 minute walk for my primary doctor before I can get a prescription for the POC. I can’t get in there for another week. I’m also looking at getting the Inogen. I’m on 1.5 liters right now at home but if I could get the Inogen 5 and it goes to 3 liters that…

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Just wondering what tyvago is? I’m looking forward to something new. Hope one of these new drugs work well.

I have had a year of struggling with having PF. A month after knee replacement surgery a year ago I got pneumonia and it was all downhill from there. I did have some lung scarring before the surgery from schleroderma but nothing like this. Finally after getting rid of the pneumonia I still have shortness of breath. The pulmonary rehab…

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I’m happy with having the watch. It only does readings on its own during the night. Sometimes more than other times. Maybe it’s because I toss and turn a bit. Mine drops during the night sometimes from 87-96. It’s usually just one drop to 87 and the rest of the readings are in the 90’s. Wish I could get that up a little higher but maybe…

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I have an Apple Watch 10 series. I have Raynauds so they can’t get a reading with the oximeter that clips on a finger. They use one that straps on my forehead sometimes and I’ve checked with my Apple Watch at the same time and it reads very close to the same +/- 1% or so. I’m so glad I have it now. I keep it on all night and it randomly…

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Hi. I am thinking of starting Ofev in a few months. I just saw my pulmonologist a couple weeks ago in Rochester. My PFT’s have been fairly stable. I haven’t taken anything like CellCept. I have RA with schleroderma causing the lung issues. I am wondering how you manage the side effects of Ofev? I’m taking Actemra for my RA and there…

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I am a patient at Mayo in Rochester MN. I had a couple surgeries done there – shoulder replacement and surgery on my elbow. I was seeing a different pulmonologist in another clinic but couldn’t get a response from him on questions I asked so since I was already seeing doctors at Mayo I had my rheumatologist refer me there. They are located on…

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@Lee

I just received your book yesterday and going through some of the nutrition section you mention how good beets are. Just wondering what you take. I’ve tried the SuperBeets powder but miss it a few times and now it’s hard as a rock! It has to be used in a certain amount of time or it gets out of condition. If I used it every day it…

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Hi Polly, I actually just got the book yesterday. Sounds like some good information there!

Hi Nancy, I actually just got the book A Matter of Breath today. My husband is reading through some of it. It seems pretty interesting. I hope I can get some insights into how to get a handle on this. I just wish doctors would be more open to natural remedies. I’m watching this forum pretty closely. Let’s hope we can get some answers.

Hi, thanks for your response. The Sjögren’s and Raynauds are not fun. With your Sjögren’s do you have problems with your mouth as far as being really sore and can’t eat any acidic food ? I went to an oral surgeon this morning and he prescribed some oral gel called lydex or something like that. I’ll pick that up tomorrow and see how that works.…

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@HughL

I’m sorry for your struggle. My lung issues aren’t extreme but I’m worried about the future. I’m debating on the enzymes, wondering if I should wait until I see my pulmonologist.

It’s so hard to know what to do sometimes. Medical doctors don’t put much hope in natural remedies. I guess we just have to hope for the best and do what we…

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Thank you so much for your helpful response. I live in the country so not much flat paved areas to walk on. I do think walking is the best. 10 minutes is the limit for me so far. I bought a NuStep machine for home and I try to do 30 minutes every day.

I see my pulmonologist in December at Mayo and will ask more about Ofev and CellCept. I’ve…

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@Nate

Thanks for replying. I’m hoping the enzymes will help. I hope to hear from some others also.

Carol

Hi everyone! I’m new to this site so am looking forward to learning more about my condition and how to treat it without all the nasty drugs out there.

I have had RA for at least 30 years but over the last 4 or 5 years I have had some scarring in my lungs. Apparently it’s because of the schleroderma I have also. I also have Sjögren’s…

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