@mahzie
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Christine McCann replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 day, 20 hours ago
Elle, I find your difficulties with your pulmonologist very disturbing. If your IPF is bad you don’t want to live in Florida , too hot,& humid for anyone with lung issues . You need to find some better Dr.’s. People like us need to live at as low an elevation as possible with very moderate weather IE. not too hot , not too cold,. there are med’s…[Read more]
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Christine McCann replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week ago
You need to see a pulmonologist AND A CARDIOLOGIST.
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Christine McCann replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week ago
Ask your pulmonologist to put you on Meds to slow the progression. You are not alone.
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Christine McCann replied to the topic When should you start antifibrotics? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week ago
Darcy: I started upon diagnosis, seems to me the sooner you start slowing down the progression the better. the only tolerance problems I know of have been in regard to nausea, but you can deal with that by taking the pills with food in your mouth before swallowing, works great for me and doesn’t take much food. As far as I know there are only…[Read more]
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Christine McCann replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
Terminal. difficult, no fun.
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Christine McCann replied to the topic For sale in the forum Using Our Forums 1 month ago
15 yrs wow isn’t that some kind of milestone since they tell you 2 to 4 after diagnosis? What have you been doing to last so long? I don’t think the only 2 meds to slow down progression were available 15 yrs ago. Congrats.
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Christine McCann posted an update 1 month, 1 week ago
I don’t know why more vital info from Dr.s isn’t very forthcoming, but it seems that people suffering from IPF< COPD etc. aren't being told some things they need to know. Like if you are taking Esbriet and have to stay out of the sun you need D3 supplements, At least occasional magnesium, & that Vit c and B12 liquid if you are over 50 and Omeg3…[Read more]
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Christine McCann replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 1 month, 1 week ago
I have been on Esbriet for 5 yrs CVS Specialty pharmacy has me reorder every month to make sure no problems have arisen since my last refill, the Dr. renews the script for 3 Mo’s at a time, never had to re-apply. I have never heard of Express scripts, Genetech is the distributor of Esbriet as far as I know. Look at other post on here for…[Read more]
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Christine McCann replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 1 month, 1 week ago
You should report him or her to an advocate or the AMA. That is totally unacceptable.
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Christine McCann replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 1 month, 1 week ago
My Dr. did for me, I thought because it is a specialty drug it had to be requested from a pulmonologist, there is a program to cover expenses through GENENTECH I thought. 877-436-3683 M thru F 6am to 5pm PT.
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Christine McCann posted a new activity comment 1 month, 3 weeks ago
Inogen is good. I have my portable through them and my big home consentrator is through Lincare. your pulmonologist has to write a prescription and can set you up with the provider in your area.
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Christine McCann replied to the topic Possible Cause of IPF – Ammonia ingestion and Statin?? Progressive? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
The I in IPF stands for a word I can never remember that means unknown cause and all of the Lung function diseases COPD, Emphysema, PF, IPF, are progressive until you die from it. There are side affects of the meds, but they are manageable, nausea being the worst for most people. I found that taking mine at the same time with food keeps it in…[Read more]
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Christine McCann replied to the topic What Do You Consider a "Good Day" With IPF? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
A good day would be if my DR. would return my phone calls, If I could accomplish something without having to sit down for a while every few minutes. If I could maintain the feelings I have first thing in the morning before I am forced to get up to pee. While I am laying there I feel absolutely normal, no pain, no breathlessness, no lack of energy,…[Read more]
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Christine McCann replied to the topic How fast does this progress? in the forum Upcoming Medical Appointments: Q&As 2 months ago
Everyone is different, Do the pursed lip breathing exercises to get rid of CO2 build up, the CO2 can cause more breathlessness. Join the 1st class medical forum group lots of good info there.
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Christine McCann replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 2 months ago
Of the 2 choices OFEV and Esbriet I choose Esbriet because of the heart complication associated with OFEV, Heart disease runs in my family so I didn’t think OFEV was a good choice for me. Esbriet has complications with sun exposure which is bad enough since I am a sun worshiper, I can deal with sun screen and a hat. Both have stomach upset…[Read more]
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Christine McCann replied to the topic Wrestling with the End Stage of Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 2 months ago
We all have to die, everyone is different so it is hard to say, all I do know is that when I start to struggle with the idea of smothering I make myself refocus on something else to keep the anxiety at bay, that is the worst feeling in the world to me , I would rather be in pain than to feel what not being able to breathe feels like. The anxiety…[Read more]
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Christine McCann replied to the topic Alcohol & Anti-Fibrotics (OFEV & Esbriet) in the forum Esbriet (Pirfenidone) 2 months ago
Blood oxygen levels drop to there lowest while sleeping so you should always use your oxygen at night or whenever you sleep.
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Christine McCann replied to the topic Alcohol & Anti-Fibrotics (OFEV & Esbriet) in the forum Esbriet (Pirfenidone) 2 months ago
You should ask your Pulmonary Dr. questions about IPF and any lung issues, primary care physicians don’t always know a lot about specific illness issues.
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Christine McCann replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 2 months ago
Genentech Patient Resource Center
Our center dedicated to getting patients and caregivers to the right resources.
Call us at (877) 436-3683 or (877) GENENTECH, Monday-Friday, 6am-5pm PT. -
Christine McCann replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 2 months ago
Try CVS Specialty Pharmacy on line regular pharmacies don’t carry these meds as far as I know.
There are other specialty pharmacies out there Humana has one, probably others do too. Your Pulmonologist can hook you up with a way to get the meds. - Load More
Hey Christine, not sure if you meant to post this as a status update, but as it is, most forum users won’t see this. You share some information that, you’re right, many patients don’t know and might benefit from so I’d recommend posting this as a topic or response in the main forums.
As for the doctors, some are better than others.. more…[Read more]