Marilyn Cellucci

Dear Donald,

Have you found that the side effects of Ofev diminish over time? I have recently started on it and cramping is bad, no diarrhea so far which surprises me since I have the cramping.

Thank you.

Marilyn Cellucci

Hi Karen,

I am just starting Ofev. I was sure I would be turned down by Medicare/drug program and then have to appeal. I was pleasantly surprised. My insurance company approved it right away! I must have a great Medicare plan. I am so fortunate. I just pay a $30 co-pay each month.

Another drug that I am on though, my insurance turned it down. It…[Read more]

Dear Pete,

Why on occasion do you bump up the prednisone, stress, illness, ? Does your doctor go along with this? I am just curious. I have been on prednisone 7.5 mg for a year, I think.       Thank you, Corgilover1

What is lung volume breathing, please?

Marilyn

Hi Phil,

I was first diagnosed in late 2009. I had been stable until last year.

Kindly,

Marilyn

Dear Christie,

I think your Mom will do just fine, she is in the hands of very competent doctors. I will pray for her.

Kindly,

Marilyn

Dear Ron,

Why did you switch from Esbriet to Ofev?

Marilyn

Dear Christie,

I have had two fundoplication surgery, a year apart, back in 2017 and 2018. I had them not because of GERD, (I don’t think I had GERD at the time), but rather because I had a giant paraesophageal hernia, an 8cm hole and the first surgery took 8 hours, and the second, nine hours, but the surgeon took three  half hour breaks during…[Read more]

Sue,

I have been on it for some time now. I have had no problems with it at all. I think we all react to the drugs a little different sometimes.

Charlene and David,

Why wait until the FVC is 80. Why aren’t the drugs started when your lung function is better?

Marilyn

You have a great sense of humor, Gweeneeth. God bless you.

God bless you, Lawrence.

Regina,

I don’t have all of the classic symptoms of IPF, many odd ones. My pulmonologist thought that doing a biopsy would not be worth it since the biopsy would be atypical and not show anything useful. It is a mute point for me since I am being treated as though I have IPF anyway.

Marilyn

My PFT’s have improved while on prednisone. I go in December for more PFTs. I’ll let you know now that my dose has been lowered.

Hi Mark,

I had started on a 40mg tapering dose. At the 40mg and 30mg dose, I had no dry, tacky cough, no post nasal drip, and no phlegm in my throat, it was wonderful. At 20mg my cough returned, although not bad and only a few times a day. Now that I am on 10mg (will be there for at least a year, unless I have an exacerbation), the post nasal…[Read more]

Hi Jerry,

I am on a tapering dose of prednisone. When I was on 40mg, I had no dry, tacky cough, no post-nasal drip and no thick mucous in my throat. Everything was still fine when I dropped to 30mg. But when I dropped to 20mg, I started coughing again, but nowhere near as bad as it used to be, but I still coughed. My post-nasal drip came back and…[Read more]

Hi,

I have severe GI problems in addition to my IPF. Starting at about last Christmas, I started losing weight, unintended. I lost over 40 pounds in less than six months. My GI doctor thought I had a malignancy and was tested with everything. No malignancy was found. So he is dumfounded as to why I am losing weight. I mentioned to him my lung…[Read more]

Allen,

Where did you have the stem cell procedure done in Pittsburgh? Were you satisfied with the results and the procedure itself?

Thanks very much.

Marilyn