Christine McCann
Forum Replies Created
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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.
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Terminal. difficult, no fun.
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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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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, but, as soon as I get up it can be rough for a little while, then it all depends on what I am trying to do. Mostly I have pretty good days as far as how I feel.
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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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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 problems associated but I have found that as long as I take my pills (3 3x a day) along with food in my mouth I don’t have a problem, before I figured that out I was nauseous quit a bit. I have been taking Esbriet for 5 years and although I can tell I am slightly worse I fully believe I am only still alive because of the slow down in progression it provides, since there is no cure and the disease is progressive I think I am doing good. I was diagnosed with Emphysema, COPD, IPF and some Asthma, (the Asthma which I never thought I had) has shown up as high in my blood work this last blood test. I hope you are seeing a pulmonologist not just a primary care physician. Because on Esbriet I have to stay out of the sun I must supplement with D3 Vitamins. Also other Vitamins make a difference in how I feel also ie; Magnesium. CoQ10, vit C, B12, I hardly ever have the digestive problems now that I had at first, but when I did, I found Sauerkraut to be a very good neutralizer. You could probably hold off on the meds if you aren’t going to be gone very long , but the sooner the better if you want to prolong your life.
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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 causes claustrophobia also. I am hoping for a heart failure in my sleep.
I am on Esbriet and have been for going on 5 years, I am fortunate to not have a lot of phlegm or congestion or coughing as, I also have Emphysema and COPD I have had pneumonia and Bronchitis and supposedly some Asthma in the past but, for the most part I feel normal as long as I don’t over exert. In the past few months I have noticed my shortness of breathe has increased. I use my oxygen more now, I fully believe that if I had not been on Esbriet all this time I would already be dead.
It is difficult to come to terms with end of life, We in this country do not prepare for , or even acknowledge it very well. It surprises me how little some Dr’s will explain things to people who really need to know. -
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. -
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. -
It no longer matters much as to what caused it, what matters is doing everything to prolong your life if you can remain viable. I chose the Esbriet medication as the other one can exacerbates heart problems and I already have enough of that in my family history, there are side effects of both medications, choose your poison.
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I have found that taking all three caps with food in my mouth so I swallow all together has kept me from nausea, it doesn’t take much half a banana works well but any food works for me. I had a lot of nausea at first but don’t any more as long as I take the caps as mentioned and make sure I wait long enough in between doses 3 caps 3x day for a total of nine my schedule is 10am 2pm 6 or 7 pm. hope this helps.
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Why is it so expensive?
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How can I tell which canula is high volume?
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Every morning when I awake my nose is dry an stuffed up, what works for me is to take a tissue and put it with one finger on one side of my nostril and one finger on the other and massage it around for a few seconds , it loosens all the dryness and then I blow my nose , I can breathe OK after than. I hope that makes sense to everyone. Works for me.
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I was told by the Lincare tech that high liter oxygen use takes a bigger canula size. I don’t now why that is not something that is told to patients at the time of prescription.
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Ask your pulmonologist to put you on Meds to slow the progression. You are not alone.
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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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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 additional info. ie, Pete’s post and others of mine with phone #’s.
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You should report him or her to an advocate or the AMA. That is totally unacceptable.
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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 check. The meds do slow down the progression.
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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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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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I agree, I have often thought about designing my own kitchen even without IPF having cupboards at a better level makes more sense to me, always has.
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The only way I have been able to keep the nausea under control is to take the pills in my mouth with the food, taking them before or after doesn’t work as well, but with seems to do the trick. I take 3 pills 3 x day Esbriet.