@deerfieldcorgis1
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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 3 weeks, 1 day 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 2 months, 3 weeks 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 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 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 3 months, 3 weeks 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) 4 months, 3 weeks 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 5 months, 3 weeks 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 5 months, 3 weeks 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 6 months, 1 week 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 6 months, 3 weeks 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 7 months, 1 week 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 7 months, 2 weeks 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) 8 months, 2 weeks 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 8 months, 3 weeks 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 8 months, 3 weeks 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] -
Marilyn Cellucci replied to the topic Digital Clubbing in Pulmonary Fibrosis Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 3 weeks ago
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 some…[Read more]
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Marilyn Cellucci replied to the topic Digital Clubbing in Pulmonary Fibrosis Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 4 weeks ago
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
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Marilyn Cellucci replied to the topic Hypersensitive Pneumonitis Anyone? (Mimics IPF) in the forum Join the Discussion: Welcome to all PF/IPF Patients 9 months, 2 weeks ago
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 -
Marilyn Cellucci became a registered member 9 months, 3 weeks ago