I have found Boost Oxygen to be very helpful. At this point I do not require O2 continuously, but my pulmonologist is starting to suggest supplemental O2. I rather stay on Boost when I need it which is when I walk and there are hills and then I get a little short winded or even doing stairs. Boost can be purchased at Walmart and Amazon. There…

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The American Lung Association has a support group called INSPIRE. Login to INSPIRE.COM create an account. I have found many answers and advices pertaining to PF. I have ILD which is close to IPF. Give the site a try to see if you like it and meets your needs.

Thank you.

PJOHN

Basically I do NOT want to wear any cannula and carry around an O2 pack. If things get worse then I will do it but not now since I am not at that point.

My biggest fear is telling my pulmonologist that I get SOB and fear that she will put me on O2. However, I use Boost and find it help. I know some day I will need O2 but not now since my SOB is not in a critical stage just minor and I recover quickly with Boost. I encourage people to go to Boost’s website because at time they have good offers…

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For PattyO

I take gabapentin for cough but I think I can’t tolerate the side effects anymore. I am getting very impatient with everything and sometimes it is like the nails on a chalkboard. I think I need to lower the dosage, but afraid the cough will increase. However, I will be checking this out with my pulmonologist for a step in the…

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Has anyone been on a hi dosage of Gabapentin(600mg – three times daily)
and then decided to lower their dosage or stop using it altogether? What
were, if any, side effects? I am currently on 1800 mg daily and want to
lower or even not use it anymore. I know you have to gradually taper it
down. Please let me know.

Where’s the link?

Please send me the link. Thank you.

Listen up everyone who is taking Esbriet 9 pills a day.That is the old way. They have  Esbriet which is now 801mg and you only take 1 pill 3 times a day rather than the 9 pills. Check with your pulmonologist.

My local pulmonologist stated my life span would be 2-5 years. However after getting a second opinion at a Center of Excellence (Univ. of Pa.) and after they doctor there reviewed my lung biopsy I was told I had over 10 years plus. So far it has been 5 years and still on Esbriet and stable.  One thing to keep in mind sitting or lying around… Read more

Steve listen to everyone and do consult your pulmonologist prior to stopping your medication. Playing doctor on your own is not the answer. Don’t do more harm than good.

I have been on Esbriet for almost 4 years and luckily for me did not have any side effects. I am stable so far and hope to remain that way.

Keep us posted.

I was selected for the Galapegos trial in Philadelphia and on my first visit they did a cat scan of my lungs and put me through lung function tests. After they got the cat scan results I was disqualified since my lungs were in not that bad of shape for my age (72 years old). I was totally disappointed that I could no longer participate but one… Read more

Who knows like others have said. I worked in a steel mill for a few summers while in college, I smoked and stopped. My cause was GERD. Acid reflux in the night and all I thought it was just heart burn and took an antacid. My local pulmonologist said I had  2-5 years left but on second opinion at Penn in Philly I was told 10+ years. I am 72… Read more

Does anyone know of a wrist device that also keeps track of your pulse ox?

I am on 1800mg of gabapentin daily (i.e. 600mg every 8 hours). My cough has subsided but not entirely. Prior to be prescribed the med I used to cough all day long. I explained that to my pulmonologist at Penn Med and she started me on a low dose and titrated me up to 2400 mg which was too much. I feel comfortable with 1800mg but that dose could… Read more