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Optimism
Hi, my name is Beverly, and my Mom has IPF. I have been an ICU nurse for 30 years, this has helped some. It has been a journey with my Mom, but we made it through another Christmas, and that seems to be our goal. Mom lives on 4-7 L O2. She wears this odd “holey” mask because N/C caused nosebleeds and she is on Eliquis for afib. Post nasal drip and cough is our current problem and I wonder if she should go back to adding humidity to her O2 although it caused her so much grief to keep it filled. We are trying Claritin but it is considered super mild compared to Zyrtec, so really not working. Benadryl and two Tylenol at bedtime ensures 8 hrs sleep with minimal cough. She lives in Canada and her pulmonologist said Ofev was like $10,000 /month? She has been using Cellcept 750-1000 mg/day, (goal 1500 mg/day is the therapeutic dose) since June1. It is cheap and also supposed to slow down the scarring. She has no nausea, no diarrhea, maybe mild decrease in appetite. I think it helped slowing scarring down because her 02 needs to keep sats 93-97% hasn’t changed over the last several months, she still uses 4-7 L. It doesn’t help necessarily with fatigue and/or breathlessness, she takes prednisone 5 mg/day and believes that helps with those. She also has diastolic heart failure, was on Farxiga which I think made her feel stronger, but she developed a UTI, and yeast infection, so that was discontinued. For those who struggle getting prednisone from your doctors because “long term side effects”, try arguing the fact that with this disease, as tough as it is to come to terms with, is anybody really concerned with the long term effects? I think the focus should be on what makes you feel better NOW not side effects 10-20 years from now. Being a nurse does not help me cope any better, she ‘s my Mom, and my best friend, and this has been very hard. She was only diagnosed March 2023 after CT scan. Survived Covid 9/23. Prayers work.
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9 Replies
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I thought if you where a Canadian citizen your health care covered Ofev at no charge? I have been on Ofev since 2016 in US. Hope your mom can be covered for her Ofev.
Ray Dingman
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Look up the following word on your computer or iPad.
Nerandomilast. Yes it is spelled correctly.
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Sorry to hear that the Canadian system doesn’t cover life saving drugs. May I suggest that your mom ask her doctor to prescribe Metformin. It is very inexpensive and has been shown to be an antifibrotic in people who are not diabetic. Also, in the far east, many doctors prescribe Quercetin, which is also a well known antifibrotic. It is available over the counter in Canada. And finally, she should also take Turmeric, another mild anti inflammatory.
I wish her well.
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Hello @Mom from a fellow Canadian! There are ways to explore getting Ofev covered. I believe it was just recently, 2023 maybe? Where OFEV was approved under the Ontario Drug Benefit plan under certain circumstances. You’d have to look it up, assuming you’re in Ontario but there are also other ways to get it partially covered including grants from the drug company itself or Compassionate Care grants. Will your Mom’s doctor support a conversation about this? There are many patients who get majority of this drug’s costs covered, it may be worth looking into. The Canadian Pulmonary Fibrosis Foundation may have more ideas too!
Take care,
Charlene.
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Cost Plus Drugs sells Pirfenidone for 135.00/ month. That is for 90 801 mg capsules. Side effects are much less than Ofev that I was on for 16 months with horrible side effects. Why the Docs still recommend Ofev first is beyond me
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Ofev is free of cost to Canadian Citizens having OHIP (Ontario Health Insurance Plan), for which the Respirologist/Pulmonologist should write to the Government get approval for the patient. I have been getting Ofev free for the past 2 years.
Ghouse
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I also have had ipf since 2019 and get my pirfenidone paid for by the government instead of $40,000 per year. I have a wonderful wife and family which gives me strength and do not waste my time praying however but use my hands to help others.
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thanks for this article!
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Hi Beverly.
As others said, you have to check with the health plan for the province in which your mother lives regarding coverage for Ofev. I would be shocked if it wasn’t covered. Perhaps her pulmonologist meant to say “it would cost $10,00 per month if you had to pay for it yourself”, rather than meaning she would have to pay for it herself. Your mom might want to ask her pulmonologist if a course of Rituximab is indicated. I had it (two doses a month apart) many years ago and it made a huge different in the progression of my scarring.
Very best wishes for both of you. She’s lucky to have such a caring daughter.
– Patricia
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