Forum Replies Created

  • John Barnett

    March 3, 2023 at 7:53 am in reply to: cooking fumes

    You don’t mention what type of cooking appliance you are using. Electric ranges, induction, convection, microwave do not emit any fumes from operation. Burning foods will add some indoor pollution but should be easily removed with an exhaust fan. Using the auto-clean function on some ranges might cause some fumes. However, the worst culprit is gas.

    When natural gas or propane is burned, it does not burn entirely. What does not burn becomes part of the air within the environment of where it is being used. Natural gas, as well as bottled gas, contains other impurities which are not as flammable. Some are natural occurring and others are added as part of the process and some are gained through handling by pipelines, etc. These, in addition to unburned fuel can be harmful to anyone with an ILD. That is why the uproar by the government lately and why it is so important to use a good means of exhaust when cooking.

  • John Barnett

    February 13, 2023 at 8:24 am in reply to: Cost of Ofev

    I was first diagnosed with IPF way back in 2012. Skipping to the topic of Ofev, I started taking Ofev about six years ago. It has been quite the journey. Side effects, contradiction with other meds…tales for another time. And recently, my provider also rejected me for continuation of Ofev. Reasons listed were an expired prescription.

    Ran into this a few years ago. At the time, I got a little panicky. At the time, Ofev was running about $10K/30 day supply. It took me several days of phone calls to copay assistance programs, Medicare, my insurance at the time as well as my Cardiologist to get it worked out. For the next 5iv years everything was ok.

    Now this year I get dropped. So as I began to work the phones, I also found out from the specialty pharmacy that provided Ofev, that my copay had exhausted the funding. I thought they were wrong but I also knew that it was going to expire soon so I let that dog go. The specialty pharmacy promised to pursue the copay and look into other financial supports. I don’t know if they ever did, they just left me in the dark. So I managed to get through to my insurance. Turns out that my copay had not run out of funds….Medicare evidently put a cap on how much they would pay in one year. Now that Ofev had increased in price to $160K+ per year, up from $120K just five years ago, they quit paying at that point.

    So, like so many of others here, I am in the process of applying to BI for Ofev. While I am grateful in a way for this opportunity, I am also a little miffed at how I and so many others reached this point. BI has literally made billions of dollars in profit off of this one drug in just a few years. They charge excessively more than what they charge in other countries, such as Mexico, Japan, Canada, Europe. A generic version is available in India at $200/year, but here it is $200/pill. There are a lot of guilty parties that are to blame for allowing this to get to this point. But bottom line is, for those of us who have this disease and depend on a medicine like Ofev to offer some sort of quality of life, it is a moot point.

    Meanwhile, I hopefully will get approved by BI to recieve it directly from them and at least reduce some of the worry. Going forward, I think there will be a generic version of Ofev in the near future just like Esbriet. Plus there are a lot of other treatments for IPF that are on the verge of hitting the market in the near future. I know that Fibrogen has started looking at different methods of administering their IPF med, both orally and as an injection. And I think that BI is getting close with another drug that currently in clinical trial.

    But in the meantime Deb, everyone here has given a lot of good advice. And by te way, the financial requirement to be able to get it direct from BI is pretty generous. I think as long as you do not make 500% over poverty level, then you would meet that requirement. good luck

  • John Barnett

    January 4, 2023 at 8:48 pm in reply to: Life span

    DXD Jan 2012. Ended up losing my job, but was old enough to take retirement. Qualified for SS so did not have to face the uncertainty of looking for employment. Initially given a prognosis of 3-5 years possibly seven.

    Early on, I investigated clinical trials thinking that they might give me an opportunity to prolong my life or at least improve the quality of life. Did not qualify for either available trials for the medications we now call Ofev and Esbriet. Did get into early trial with Fibrogen which did improve my health. Unfortunately, after 3 years, Fibrogen felt it was too expensive to continue and the program closed for those of us on extensions.

    Started on Ofev the fall of 2016 and have been enjoying life despite the many side effects of which I have endured many of….diarrhea, muscle tears, dizziness, nausea, constipation, cramps, headaches, spontaneous bleeding have all been a part of the journey.

    Long story short….thousands of miles of travel by plane, car, motorcycle, RV….remodeling projects…joys of being a grandparent have been my journey over the last 11 years since being diagnosed. I am currently going to begin the third (?) clinical trial, or is my fourth. But more importantly, I have just recently started using supplemental oxygen and then only for times of exertion.

    So, my story should tell you that the prognosis is something that a doctor will tell you based on historical data that is old. It is based on the numbers that are already three years old if not older. Everyday, new drugs are being tested, new treatments being evaluated, and more importantly new knowledge about this disease is coming to light. Information that helps people who are facing this disease now.

    So don’t despair because your doctor gave you a prognosis of 3-5 years. He is trying to give you an idea that your life, may be shorter than you anticipated. If anything, it should be a reminder that we are mortal. Don’t think of it as a goal, but just a reminder that all good things will come to an end….just probably not today and probably not tomorrow

  • John Barnett

    June 16, 2022 at 8:26 pm in reply to: When should you start antifibrotics?

    rereading this and my post, I realized that I kind of avoided the question. When should I start anti-fibrotics? Your current pulmo advises against it until you get worse? Wow! I think I would get another opinion if possible. I mean, would a cardiologist advise you to wait for heart medications until you had a heart attack, if you are showing signs of cardio stress? Would an oncologist advise to wait until you got worse after diagnosing you with cancer? I don’t think so.

    Yes the side effects can be harsh. But the alternative can be even harsher. IPF does not have an established time line that one can look ahead at and say, “well, I can wait X months until I actually need…”. IPF and PF both can be mild for sometime and then one excerbation later, you are on a steep downward spiral…or not. It is not a predictable disease and does not follow any path.

    A friend of mine, who had IPF, was playing tennis one day. Yes, she was playing tennis. She collapsed on the court and was transported to a hospital. Within days she was place in a medical induced coma. Within ten days of collapsing, her lungs were shot and she died. Extreme example, but an example that IPF can go from mild to death in a very short time. PF is not much different. So go see another doctor.

  • John Barnett

    May 25, 2022 at 11:33 am in reply to: When should you start antifibrotics?

    I read everyone’s replies in this thread. And since I am an IP patient and take Ofev, my opinion is not much different.

    One hesitation that I have in recommending Ofev is the price and coverage. Here in the good ol USA, price and copay can range quite a bit. I’m on Medicare and due to my limited income, qualify for a scholarship to pay the exorbitant copay. Otherwise, I would not be able to pay the copay. Price for Ofev and Esbriet are extremely high in the USA compared to the rest of the world. So, first off, my advice would be to check on the affordablity.

    Second, the ability to tolerate either medication is important. I take the 100mg Ofev, twice a day. I started out on the 150 and after 8 months, severe weight loss, nausea, muscle tears, headaches, dizziness, and spontaneous bleeding, I finally had enough and asked to get it reduced to 100mg. I still have some issues from time to time, but am able to tolerate it much better. In retrospect, it might have been better to start on 100mg, then increase it to 1 100mg and 1 150mg per day and then to a full dose. That way it might have been easier instead of the trauma I endured from the get go.

    One important thing to note is food. I have found that some foods will trigger nausea, diarrhea more than others. One should not be alarmed if you suddenly start having diarrhea or constipation. They are side effects not so much to the mediaction, but the interaction of the medication and certain foods. Learn which foods trigger them and then make substitutions.

    Also, don’t get your hopes up that antifibrotic medications will be a cure all or even a cure. At best, they are only going to help, I repeat, help you to live a longer life and with a better quality. The rest is up to you. Stay active. Don’t dwell on the what if’s, but do dwell on the what can’s…what can I do today?…what can I enjoy today?…can I travel to see…? can i go and do…?

    I will take a moment to do some bragging. I was diagnosed 10 years ago. I was a participant in Fibrogen’s drug trial for phase 2 and received it for 3 years before they ended the open label leaving me without treatment. It was at that time I started Ofev. That has been treacherous at times. I recently completed another drug trial and will be starting the open label. I am still on Ofev.

    While my quality of life is not quite what it was 10 years ago, I am still not using supplmental oxygen. In the last ten years, we have travelled by motorcycle from coast to coast, by RV from Canada to Mexico, and several other states in between. We have rebuilt not one but two homes on our own. Gardening, yard work, landscaping, mixing and pouring concrete, building decks, garages, sheds, etc has been my way of staying active. As well as walking and everyday normal activity. So, yes, IP is bad, but it is not the end of life. Start the drug….and keep in mind that  life is not how many breaths we take but how many moments that are breathtaking…..

  • John Barnett

    December 16, 2022 at 10:53 am in reply to: PRM-151 Clinical Trial ?

    i was in the PRM trial. According to my research coordinator, the results were less than anticipated. It was determined that there were few if any benefit to patients to continue the trial.