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I can not use inhalers they make me feel worse so I don’t use them. The one with Albuterol in perticular bother me the most. One of the pulmonlogist I had once said to use it every day but I go for what mwkes me feel better, and when I have a PFT test I tell them to use the one without the Albuterol.

@charlene-marshall

Hi,

Agree 100%. My wife has said try going without the O2 (crickets…) What does help is eating very healthy, taking a basket of supplements, water, tiny exercise to condition the muscles as much as possible (I must be careful as when I do too much I pay for it with cramping later) and keep the weight off.

Oh did I forget to…[Read more]

Hi,  I know this is an older post (2020) but am just now reading it.  I was on OFEV,  slowed the IPF but was unable to live with side effects and 30 pound weight loss.   After a break went to Esbriet.  Good results modest side effects for the first nine months. Then the negative blood test for liver function.  My liver shut down and liver failur…[Read more]

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 o…[Read more]

I had the same problem. After 8 months and 25 lb. loss, I stopped taking OFEV. I am still on Esbriet and so far so good with oxygen levels.

Sorry to hear of your loss.

When the time feels right, I hope you will share something if Ernie Kully’s life with the board.

Be well,

JB Fort

True!

I’m trying Mucinex now. How long is too long to stay on it?

What are the inhalers and did they work before increase?

Charlene, I agree with you entirely. Rest does not help with my IPF breathing problem. Only if I become breathless through activity and need a few moments to recover, do I see rest as helping. I try to push myself when walking so that my lungs are exercised, although I probably can only walk 100 yards before having to stop to catch my breath.…[Read more]

Hi Theresa,

Nasal drip and excessive mucus are really big problems for many of us and I’m sure different things work for different people – here are my experiences.  (I live in the UK so perhaps medication names may be different in the US).

I was diagnosed in February 2021 after suffering with breathlessness, post nasal drip and mucus for a…[Read more]

I use a couple of things for the congestion and post nasal drip issues. I have a prescription Nasal Spray called APO-MOMETASSONE and I also take MUCINEX to help the congestion.