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    • #32124
      Darcy
      Participant

      Hello,

      I actually was diagnosed six years ago but no one told me anything about IPF and I didn’t realize how serious it is or even really what it is. They did a CT scan two years in a row and said it was stable and mild so I thought it was something that would never effect me. Then last fall my mitral valve was severely prolapsed and I had open heart surgery. The doctor thought my continued shortness of breath might be due to the pulmonary fibrosis so he ordered another CT scan and referred me to a pulmonologist. This doctor says the fibrosis is still mild. While he did tell me about the disease and that eventually we will have to deal with it he said most people don’t tolerate the antifibrotics and wants to wait until my disease worsens before starting me on them. I read that you should start them upon diagnosis. So,  I thought I’d ask what all of you think. When did you start treatment and is it wise for me to wait?

      Darcy

    • #32126
      Jeff Taylor-Jackson
      Participant

      Hi Darcy,

      Everyone is unique, everyone is different.

      I guess you are in the USA? Here in the UK OFEV is available free on presciption only if your consultant recommends you take it. OFEV or <span class=”kwd-text”>Pirfenidone</span> has side effects that may not suit you. I have just started taking OFEV and so far no side effects – so I am lucky.

      As the antifibrotics have been shown to slow the progression, then the answer you are looking for is: “start them as soon as you can” with the caveat that you do this under medical supervision. the drugs are very expensive so make sure you medical insurance can cover the cost.

      The UK price is £25K per annum.

      Hope it helps

      Jeff in England.

       

      • #32135
        Darcy
        Participant

        Thanks Jeff. That is helpful information.

        Darcy

    • #32127
      Christine McCann
      Participant

      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 2 meds available both have side effects one can affect your heart the other one Esbriet keeps you out of the sun, that is the one I chose because heart trouble runs in my family. Both meds have other similar ones but your Pulmonologist will monitor you with PFT tests and blood work on a regular basis. When I was diagnosis I was told people usually live 2 to 4 years after diagnosis I am on year 5 not feeling too bad.

      • #32136
        Darcy
        Participant

        Thanks Christine. It’s nice to know there are people who tolerate the meds and know how manage side effects.

    • #32130
      Michael Fugler
      Participant

      The short answer is the same as Jeff’s, “start them as soon as you can”, with the same caveat, medical supervision and they are expensive so check your insurance. I am not a medical doctor but I feel like I have graduated to something more than a layman’s opinion as I have studied IPF for hundreds of hours for almost 5 years since my original diagnosis. Once you receive a fibrotic scar, the cell is dead and you don’t know how fast the disease may start progressing, anything you can do to slow it down, is worthy of consideration. The other side of the coin is, the meds come with significant side effects, which you need to be willing to bear, such as nausea, diarrhea, cramping. I have been asking for years if the OFEV I am taking is working and the answer is always, we don’t know, we hope it is slowing the disease down. So, I “bite the bullet” everyday and suffer for the possibility that I am taking the best course of action to fight. I also, ride my bike on days I am too tired to do so, do water aerobics when I don’t want to and swim a few times a week when a nap sounds like a better idea, all to fight and hope the sacrifice is contributing to my still being here. I wish you the best in making your decision.

       

      • #32137
        Darcy
        Participant

        Michael, you hit the nail on the head. We have a progressive disease that is unpredictable and I dislike the idea of waiting until the condition worsens to take medication to slow the progression. Living with side effects may be the price we have to pay to live longer just as is the exercise which is not always easy when you don’t feel well. I plan to discuss this with my doctor again and also check to make sure insurance pays for it.

    • #32138
      Charles
      Participant

      Hi all of you guys. My name is Chuck Gerson and i had been diagnosed with IPF in late October 2013. I have been on OFEV for about 4 years or so. Fortunately i have had a cast iron stomach most of my life, so i have had relatively no side effects. However, in the last 6 months or so i have gotten weaker, want to sleep more than i should and i can tell that my breathing is getting much more shallow. So i probably don’t have much longer. Like it has been mentioned that the average life span is 4 years, so i am way ahead of the game. The sad part of this whole mess is that the drug companies can’t make any money from us because there are so few of us that have this. If that was not the problem, you would think that the manufacturers of the available drugs would have sent out, every month or so, questionnaires asking us what we have done or where we have been or what we have eaten etc etc. in the last twenty years to all of us who are taking the drugs to see if there is any thing that matches. That way there might be a starting point to help figure out what the hell we have so they can maybe figure out a way to stop or prevent this unusual scaring. Chuck signing off.

      • #32354
        Sharon MacMillan
        Participant

        I agree with you. Thanks to the researchers who made this option possible.

    • #32141
      Marianne
      Participant

      Hi all –

      It is something you need to discuss with your doctor.  I would suggest going on antifibrotics as soon as possible.  I was diagnosed with IPF in May 2019 and was started on OFEV a few months later.  So far it seems like the OFEV is keeping my lungs stable.  Usually I tolerate the medicine pretty well.  Occasionally, I have a flare up and have to add steroids for a bit.  I also have GERD, HP,  Type 2 diabetes, hypothyroid.  In March 2021 started on supplemental oxygen on exertion.

      Hope this helps.

       

      Marianne

      • #32282
        Christine McCann
        Participant

        I think you are mistaken as to the number of people who have IPF or PF I am told it is wide ranging. Along with COPD. There is a lot of research going on to find a better therapy, but right now the 2 meds that are working well to slow the progression are available, get in touch with Genetech for assistance with the cost and additional info.

      • #32289
        Darcy
        Participant

        Thanks for the advice Marianne. I think it is good advice to start the medicine soon even though I don’t have much in the way of symptoms yet. But I guess that is the point, right?

        Darcy

    • #32146
      Jackie Kalina
      Participant

      I can not believe how long it has taken some to even get a diagnosis. I went to the doctor one day, had an ex-ray another day, they saw something, got a CT scan and was told I had IPF. I immediately went to pulmonologist and he confirmed diagnosis. I was immediately put on OFEV. I can only stand 200 mg a day. That was two years ago. No oxygen yet. My main curtailment is extreme fatigue. I HAVE to take a nap every day. I have zero motivation to do anything. I am going to a new pulmonologist this month. Mine moved to Florida. I am in California. I am going to be 82 soon. I guess no one wants to “Leave the Party.” I don’t, but I am lucky enough to live this long. The worst is yet to come and that I dread. However, two days ago, someone ran a stop sign and was aiming right for me. The thought flashed through my mind, “I am going to die.” He was young with good reflexes. He slammed on the brakes and turn his car 360 degrees and missed my car. I was very shaken. No one knows when and how we will leave this world and that incident reinforced my mantra “One Day at a Time”

    • #32152
      Charles
      Participant

      Hi Jackie, i did not even know that they had 200 mg for OFEV. I have been on 150 mg for about four years. I to get sleepy in the late afternoon. Sometimes i just fall asleep watching TV. But i am on my ninth year and lately the way i have been doing, i probably won’t make it to 2023. If your pulmonologest was Dr. Zisman, you are lucky that he moved. Fatigue and ambition is a real problem as well as living higher than 5 or 600 feet in altitude. Keep a good attitude and it will help. B T W, the average life of a female in the USA is 80. So you have already beaten the odds.
      Charles Gerson, Cambria Ca.

      • #32283
        Christine McCann
        Participant

        The fatigue is likely due to the diminished amount of oxygen to your brain seems to me it would help to be on oxygen therapy, I know I need it , It was the first thing I was prescribed especially when I sleep, that is when your blood oxygen levels dip the most. Get an Oximeter and see if your levels are high enough, should be in the high 90’s or better.

    • #32180
      Jeff Taylor-Jackson
      Participant

      Hi Jackie,

      I am in England. The sad thing is, I tried for about 6 months – yes you read that right – six months to even get the GP surgery to answer the phone. They only operated the switchboard for an hour, 9 am to 10 am, so at one minute past nine, you may get placed in a queue, if you were fourth or more in the queue, then forget it – your call was not taken.

      The one time my call was eventually answered the receptionist said that the waiting list was six weeks, but I could try their new “E consult” method where the GP phones you. That only works if you are in or can get to the phone, because if you miss that call, you have to start over.

      When I missed the call and tried to call back, this took two weeks to get the surgery to answer the phone, I had the same response.

      I did say that I couldnt do the E consult because I needed  GP to listen to my chest and my breathing. At that time I was concerned that I couldnt catch my breath for some reason.

      The receptionist said “Well you will have to wait”

      I said “Then If collapse and end up in hospital, you will know the reason why”

      The receptionist laughed and put the phone down.

      Eventually I tried the new service we have here called 111, its like our 999 or your 911, but for non-life threatening events.

      I was advised to present myself to A&E. I then had a blood test, ECG and an X-Ray. It was only then the doctors in A&E told me something was not quite right.

      So it did take about six months for my diagnosis. This was from me worrying about my constant coughing and breathlessness some months before my first call to the GP, for me to get the news.

      I appreciate that nothing is perfect, but my GP service does leave a lot to be desired.

      Regards

      Jeff.

    • #32181
      Richard D.Gueard
      Participant

      Hi my name is Richard Guerard , I started out on 150 ofev then when to 100 twice a day. because of the side effects.  My doctor wants me to go back on the 150 twice a day. Anybody got any idea’s?

      • #32186
        Charles
        Participant

        Hi Richard, i started out on 100 mg and soon after went to 150 mg because i had no side effects. So my only suggestion would be that you should try the 150 again and see if the side effects are severe enough that you can’t handle them and need to go back to the 100.
        I am on my ninth year using the 150’s and of course it’s hard to guess if it is because of my higher dosage.
        Good luck, Charles Gerson

      • #32284
        Christine McCann
        Participant

        You need a Pulmonologist.

    • #32184
      Steve D.
      Participant

      Hi – I would start meds as soon as possible. I’m on Esbrit and have been for 2.5 years. I’ve had no side effects except for nausea if I don’t eat at least a piece of toast before the first morning dose. Other than that I have not had any issues. I have blood work every 60 days so they can monitor liver enzyme levels. I am still not on oxygen but do get tired and struggle with things that I never gave a second thought to. I also utilize a pulmonologist that practices at a teaching hospital so I am kept aware of possible clinical trials going on. Hope all this provides some additional food for thought.

    • #32185
      Duncan Fowler
      Participant

      Darcy
      By now you must understand that even slow-growing fibrosis of the lungs can and probably will eventually cause you breathing difficulties.
      The 2 drugs that FDA has approved for treating IPF just slow down the growth which should mean you will have normal breathing for longer.
      If I were you I would want to start on one of them as soon as possible.
      I do take OFEV in both the 150s and the 100s. For me, I take the 150’s in the morning and the 100’s at night, and that combination has minimized the GI issues with OFEV and I don’t need to be concerned about exposure to sunlight. If you have issues with OFEV, then just try the 100s twice a day.
      Esbriet, the other drug is available but it is my understanding you need to take several more pills daily and you may have a problem with too much sunlight.
      So in my book the sooner you start taking them the slower the growth of your fibrosis and I assume
      the longer you will live
      Good Luck
      Dunc

    • #32188
      Brenda
      Participant

      Hi, Brenda Colvin. I live in Florida and was diagnosed with IPF little over 2 years ago. I am on no meds yet. Just had CT scan and full blood work done 2 weeks ago. My Pulmonologist said no progression.I still have a very full life. I play golf and walk and still do all my housework. I have an occasional cough with phlegm sometimes. Not persistent. My dr says he doesn’t want to start me on meds yet bc of side effects. I go in 6 months for another scan. Guess we will see what happens. I like keeping up with everyone on my he forum. Very helpful.

      • #32203
        Charles
        Participant

        Brenda, i am on OFEV and have been for 4/5 years. It is to meant to slow down the progression of the IPF. I would suggest that you start now if in fact you have IPF. Start slowing it down now. If you wait until it gets worse, you may be cheating yourself out of a few precious years. You are guessing that you will have and can’t handle the side effects. Try starting on a lower dose, maybe 100 mg. I find it hard to believe that your doctor said to wait. So for whatever, that’s my advice to you. I have had no side effects at all. You just never know.
        Charles Gerson

      • #32285
        Christine McCann
        Participant

        Esbriet or Prifenidone which is the generic name does keep you out of the sun, but the other OFEV has heart complication as a side effect and I have heart conditions in my family, so I chose not to add to that. They both have some common side effects such as nausea but you can combat that easily by swallowing the pills with food in your mouth at the same time, I have tried eating something before and or after and it does not work as well for me.

    • #32199
      John Barnett
      Participant

      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…..

    • #32347
      Gul
      Participant

      I am Gul from Hong Kong . I was diagnosed with IPF after CT scan in Jan 2017 and my pulmonologist put me on perfenidone 600 mg gradually increased it to 2400 mg per day . I did not have any serious side effects  except skin rash which was manageable .  I am on oxygen 2litres for last one year.

      In May 2022 my dyspnea worsened and after CT scan and Lung function test my pulmonologist advised me that perfenidone was not working anymore and he has now put me on Ofev 150 mg twice a day. Fortunately I am tolerating it well without any side effects . But my dyspnea has not improved . As I said I am on 2lit oxygen at rest but if I just get up to go from 9ne room to another my saturation drops to 84 percent and feel very breathless . Does anyone have this experience and I shall be grateful if it could be shared with me

    • #32355
      Vandana
      Participant

      Hello all

      my name is Vandana and I was diagnosed last year although my CT scan showed something towards the end of 2019. My doctors are still not sure of the diagnosis but based on my genetic testing think I have IPF. My pulmonologist at Stanford recommended I start medication in December last year but I waited till I had undergone my shoulder replacement this year.I have too many medical problems such as moyamoya disease, avascular necrosis and a lot others mostly rare diseases.

      I have too many medical problems such as moyamoya disease, avascular necrosis and a lot others mostly rare diseases.

      I’m glad to be on this forum. My insurance denied Esbriet So I am now taking the generic version had my doctor had me ramp up very slowly with one tablet for a few days then increasing to twice a day then building to three times a day. Taking it with food helps and minimizes the G.I. symptoms.

      I’m not a candidate for ofev because of the risk of bleeding especially with moyamoya disease. I am 57 but grateful to be here and hoping I will be around for a few more years. Due to all the other major problems I have had I am not afraid of dying but I am afraid of suffering. So I take it one day at a time and try to do the most I can and enjoy myself.

      Starting medication early would be the right idea.

      starting medication early would be the right idea.

      Wish you all the very best

      Vandana from California

    • #32356
      Vandana
      Participant

      Apologies for the duplication in my previous post, somehow dictation is showing up twice

      Vandana

      • #32357
        Charles
        Participant

        Vandana, from what you have said and (i am not very familiar with all of your other ailments) from what i am reading, they are not going to cause you to die. IPF is. So i would concentrate on the iPF and it’s medications. I have been taking OFEV for about five years now and was diagnosed with IPF in late 2013. I am way over the average life span that they predict. Like you, i am not afraid of death either but when it is time i’d like to go ot with ease also. OFEV is made by Boehringer Ingelheim (BI) and they have a program that will pay for it if you qualify. Hope that this helps a little, Chuck from Cambria Ca.

    • #32358
      Jim McCool
      Participant

      Esbreit is being made Generic by Teva and Sandos and one other Pharmaceutical……that should bring the cost down……….

    • #32353
      John Barnett
      Participant

      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.

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