I began taking Jascayd one week ago after my doctor got it approved directly from the pharmaceutical and using Medicare plus Aetna supplemental ins. For the first three days, I had nausea and headaches. Now I’m tolerating it fine. I have stopped taking pirfenidone per doctors advice. I’m in the advanced stage of IPF with only about 20% lung…

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Sam, I inadvertently posted something under “Loving Memory”. Can you move it to a general posting for me? The subject is about “Umbilical cord/stem cell therapy”. I’m just not great at navigating these kinds of things. I appreciate all that you contribute and know that it takes a lot of your time. Thanks for all you do. Debra Lowder

I recently attended a meeting where a representative from Amplified Wellness spoke. He was hailing the praises of stem cell therapy, harvested from umbilical cord donors. This therapy, also referred to as regenerative therapy, treats patients who are suffering from pain management, and also pulmonary fibrosis. I would like to know if anyone…

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Sam, I’m frankly terrified that funding for research will dry up. It has been promised to us that Medicare will not be touched. We have to hope that is true, but at this point it’s a little early to tell. At any rate, keep up the good work, and continue on being a voice. My health care has not been affected, but then I also pay a hefty premium…

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Best advice ever- keep getting vaccines. Get ALL that are available- pneumonia, flu, COVID, RSV. Also, keep practicing all routines we had in place during the pandemic. Be diligent and take Vitamin C, D, turmeric and eat healthy!

Debra Lowder

Invest in a sleep number bed (or any bed with the elevation option). It’s well worth it. That way you can adjust throughout the night as needed with a touch of a button. Also, I find that a Gabapinton and melatonin help tremendously. I still don’t sleep completely through the night, but I only wake up once for a bathroom visit. Then I shift…

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I have been taking Esbriet for 3 years now and what helps me the most is making sure I drink plenty of water and eating at least 10 mg. Of protein with each dose. When I first started taking it, I would get bad headaches and nausea. The worst side effects lasted about 4 months and then subsided. I hardly notice any now, and it was well… Read more

Dear Cecil, When I began taking Esbriet 2 years ago, I was assigned a nurse who gave great advice about diet and managing side effects. Genentech assigned the nurse and she was a lifesaver. The side effects subsided after about 4 months and I am managing very well now. I feel good after being diagnosed with IPF three years ago. Still not on… Read more

BRAVO. Well said, Darlene. I couldn’t have expressed it better myself.

 

50 MG. Per day.

When I had COVID last fall, my pulmonary doctor told me to take zinc. I didn’t know why, but I started taking it and I haven’t stopped. I’m holding my own and feel pretty good for this being my third year living with IPF. Not sure if it’s due to zinc, but it sure hasn’t hurt any.  Debra Lowder

Trying to keep that healthy balance between acceptance and being thankful for “good days “, is a challenge. Each step (like needing oxygen for the first time), brings a new level of acceptance  that things will get worse. All families are different, but I think mine is typical in that some members are more accepting than others. It’s… Read more

Dear Laila: I was prescribed Esbriet 6 months after my diagnosis, and I have had good results on CT scans – very little progress with the disease. The side effects were not too bad and they lasted for about 3 months. They are now manageable, and my diet change was a huge factor. The best advice for managing the side effects: Eat well and… Read more

In response to Laila: I too am in the beginning of accepting this disease (diagnosed April 2020), and my best advice is to exercise. I walk 2 miles a day at a health center where the environment is temperature controlled. I feel good (except for fatigue in the afternoons). I am 68, and still healthy enough to travel. I guess this is as good as… Read more

I had the Pfizer in March and tested positive for COVID 2 days ago. I was diagnosed with IPF in March 2020. I ran a fever for 3 days, had a bad headache and cough, with body aches. The worst seems to be over here at day 5. I stayed out of the hospital and do not need oxygen. I’m very thankful for the vaccine and recommend it for everyone.

Wendy, I’m taking Gabapentin for pain and as a muscle relaxer. I only take it when I’m going to sleep (at night), so the side effects don’t bother me. What are you taking it for? Debra

 

Wendy, I’m taking Gabapentin for pain and as a muscle relaxer. I only take it when I’m going to sleep (at night), so the side effects don’t bother me. What are you taking it for?