Dear Jan,

I am hoarse most of the time now. Can’t talk too much, as it seems to exacerbate the hoarseness. I never knew hoarseness was a symptom until I read it somewhere else. I thought it was just weird me.

Dear Sully,

Is “dark crystal castle with lights” like a doll house model or something like that?

Hi Malcolm,

I bought one from O2totes from Amazon, lavender color. It is perfect, none of all of the extra compartments, etc.

Have a good day.
Kindly,
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.… 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… 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… 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… 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… 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

 

Hi Anne,

I was originally diagnosed in 2009, but the pulmonologist said it was mild and would just watch it. Actually, she wasn’t sure of the original doctor’s diagnosis either. I guess the doctors don’t even know why the fibrosis can remain stable for years. If they knew, the disease could be stopped before too much damage was done. I hope… Read more

Hi Charlene,

Not a question about clubbing, but something Ron had said. He has had IPF for 13 years with very slow progression. So the disease can remain stable for quite some time. Why are we told when diagnosed, that we only have a couple of years left (unless the patient was really badly off when first diagnosed.

Many thanks,

Marilyn

Dear Catherine,

Did you have a blood test called hypersensitivity pneumonitis profile done? Did parts of it come positive? I’m just curious because mine have just come negative and the pulmonologist originally thought that maybe that is what I have.

Kindly,
Marilyn Cellucci