Nancy
Forum Replies Created
-
Hi Carol,
I have been diagnosed with PF due to CREST (scleroderma) with Raynaud’s and Sjogren’s. I take 200mg Ofev/day and I’d like to get off of it. I am too tired and sometimes so tired I only sleep and have to stop for a few days. I now have high blood pressure and had a problem with my liver until I lowered the dose from 300mg/day. I have liver tests every 3 months to monitor.
I am about to take on some research to find alternatives and create a plan for the healthiest life. One place I’ll start is a small book on Amazon written be Lee Fogle – who has also written about his progress here – “A Matter of Breath.” He is the first to say he is not a doctor and provides no cures but his book so far is very informational and inspirational.
I will also look into other treatments and read this forum. I hope to find a medical professional who will go through my research with me as I try to find an alternative to Ofev and a healthier life.
Good luck!
Nancy
-
Hello! I started in October 2022, 150 mg/twice per day. I expected GI problems but never had them, however, Ofev affected my liver functions, I got high blood pressure – never had it before – and after a month I became so exhausted I had to stop taking it for a few days. When I started up the exhaustion began to build again and I have to stop again to control it as well as liver function problems. I am now on 100 mg/twice per day and I’m on blood pressure meds. Liver function is fine and I am tested monthly. Occasionally I am exhausted and I stop for a couple days to get back to normal. I think it makes me generally more tired than I would be without it but it is a trade-off I make to protect my lungs. Scarring has not gotten worse.
Best of luck, Nancy -
Thank you for this. Is there a chance it could be recorded and made available? Unfortunately this is a holiday in the U.S. and I hate to miss it.
Thanks!!
Nancy -
Hi Wes, I would still like to participate. I am in Pennsylvania, EST.
Thanks!!
Nancy -
I’m interested in joining you all in a support group. Thanks.
Nancy -
Hi Wesley,
I was diagnosed in May 2021 with IPF and later with scleroderma, and have progressed enough that I just started Ofev. I am not on oxygen, but cough a lot and have reflux. I take omeprazole for GERD.
I am also treated by a traditional Chinese medicine (TCM) herbalist and drink a tea of herbs and fungi and medicine for reflux. The tea is intended to strengthen my lungs, control mucus, among other things, and the tincture of bitters reduces reflux. There is quite a bit more peer-reviewed research on TCM which is interesting reading.
I am working toward eliminating dairy, gluten, anything artificial or processed, and I exercise 4-6 times a week for 1/2 to 2 hours – swim aerobics, pickleball, yoga, walking, and help in the fields at a vineyard. I have lost weight and feel very good most of the time with occasional bouts of major fatigue. I’m 68.
I’m using a multi-pronged approach— Western doctors and TCM, exercise, healthy eating.
Nancy Evans
