@deerfieldcorgis1
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Marilyn Cellucci replied to the topic Side effects of exposure to the sun in the forum Esbriet (Pirfenidone) 3 months, 3 weeks ago
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
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Marilyn Cellucci replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 4 months ago
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]
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Marilyn Cellucci replied to the topic Prednisone in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
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
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Marilyn Cellucci posted an update 10 months ago
@cscloughverizon-net
Camilla, Is it possible to post a picture so I can see just how the cart and basket are put together? -
Marilyn Cellucci replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 11 months, 1 week ago
What is lung volume breathing, please?
Marilyn
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Marilyn Cellucci replied to the topic Need better diagnostic info in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
Hi Phil,
I was first diagnosed in late 2009. I had been stable until last year.
Kindly,
Marilyn
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Marilyn Cellucci replied to the topic Fundoplication to Treat GERD in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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
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Marilyn Cellucci replied to the topic OFEV low 02 levels in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
Dear Ron,
Why did you switch from Esbriet to Ofev?
Marilyn
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Marilyn Cellucci replied to the topic Fundoplication to Treat GERD in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Marilyn Cellucci replied to the topic Low dose of Esbriet, is it worthwhile? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
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.
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Marilyn Cellucci replied to the topic Ofev UK in the forum Ofev (Nintedanib) 1 year, 5 months ago
Charlene and David,
Why wait until the FVC is 80. Why aren’t the drugs started when your lung function is better?
Marilyn
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Marilyn Cellucci replied to the topic What should I expect as IPF progresses? in the forum Caregivers and Spouses 1 year, 6 months ago
You have a great sense of humor, Gweeneeth. God bless you.
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Marilyn Cellucci replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago
God bless you, Lawrence.
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Marilyn Cellucci replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 1 year, 6 months ago
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
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Marilyn Cellucci replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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.
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Marilyn Cellucci replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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]
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Marilyn Cellucci replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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]
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Marilyn Cellucci replied to the topic Ofev UK in the forum Ofev (Nintedanib) 1 year, 8 months ago
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]
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Marilyn Cellucci replied to the topic Stem Cell Procedure for IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 9 months ago
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
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Marilyn Cellucci posted an update 1 year, 9 months ago
I have a question for those of us who are on long-term, high dose prednisone.
I have developed the side effect of blurry eyes. I do have an appointment later in the month with my eye doctor to be checked out. I am worried about getting glaucoma or cataracts (but I have already had cataract surgery). Can I get them again? What are others…[Read more] - Load More