Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs - IPF - idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I've learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I'm looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don't smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.
We found out in Feb.of this year my husband has IPF.He had a biopsy and that was how they found.We were just like you we were devastated.The pulmonary Dr.helped us with a Pharmaceutical Company and was given a grant for a medicine called OFEC,which is a clinical trial and it is suppose to slow the progession of IPF down.Without the grant we could never afford the medicine at 94000.00 a year.The side affects of the Ofec,are terrible but what else do you do.Through alot of sick times we have found a nap everyday and diet and exercise helps alot.Keep faith and take one day at a time that is what we do.Prayers for you.
Hi. I just wanted to respond to your post as I wanted to let you know that the meds you have listed; I am only familiar with one. My husband was diagnosed in May with IPF and elected to go on Ofev. We finally finished the paperwork and got approved from the manufacturer of Ofev to receive the medicine free of charge. There are many grants that are available to you depending on your income. In our case, we had to go directly to the manufacturer and were qualified. We received the meds and within the first month, my husband was feeling much better and his breathing test increased by a large number. He had the overnight test for oxygen prior to taking the meds and tested positive for needing oxygen during the night. After being on Ofev for a month, he had an additional test and he did not need the meds. While I understand that medicine for one person is not the same for another person. I just wanted to let you know that some meds do work. My husband who could not go out to pick up the paper and be exhausted can not do so many things that he had not been able to do. Ofev may not be the right medicine for you but I would encourage you to try something that will slow the progress of the disease; while it may not be a cure, it can certainly make ones life easier and the quality of life is so important with this disease. I being the wife hate seeing the degradation the disease causes; I also rejoiced at the sight of him feeling so much better and returning to the man I married. With that said, I hope you will give some thought to the medicine that is available to you. Best regards. A loving wife.
Hi, any update on taking Ofev? My doctors suggested me to give it a try. I’m hesitant, I’m 40, my lung disease hasn’t progressed in years, although, I don’t have much reserve. Ofev was just approved by fda in September for my condition and i feel like a experiment,, and this scares me. Any advice is appreciated..
Yes, I have IPF as well. My Pulmonologist discussed OFEV with me and given the restrictive cost and the fact it is not a cure but a means to slow the disease's progression, and that it has some pretty lousy side effects, I opted out.
I was diagnosed in 2018. Like Larry (2012) I packed up my statin prescription because of what I read about the possible connection between statins and IPF. No change in my life style since then and, while not a clinical determination, I feel no worse than I did before. Now, Dr. wants me back on statins because of increased cholesterol issues. We'll see how that goes. The big question is, which one will get me first - failing lungs or clogged arteries?
As mentioned, I have been reading a lot about my IPF. Recently, I came across some interesting research done by the University of Alabama, Birmingham describing a reversal of IPF in a patient taking Metformin, an "ancient" drug used to control blood sugar. This may sound funny but, I'm glad I was also recently diagnosed with Prediabetes because, I am now on Metformin. So, time will tell. Based on statistics given on several sites, I am among the cohort with the least time, as I am over 70. I am now 12 months post diagnosis and the average is 14 months for folks my age. If I remember, and am able, I will update on my progress, particularly with respect to any Metformin related stuff.
I am still moving snow, and have an active life but, I believe I owe my continued strength to my Creator and prayers of my fellow Christians. With regard to using medicines, as Jesus said, "Be it unto you according to your faith".
Two questions: I'm here because my husband was recently diagnosed with PF. What do you all do to get meds for this? His doctor suggested ofev which is $3900 a month. He is a veteran so they are trying to get help that way, but we don't know what to do in the meantime. Also, I just started asthma treatment and the doctor prescribed 20 mg prednisone for five days. I am in great pain from it, so after four days, she said to stop taking it, but now 3 more days and my back, chest and stomach hurt so much. Is this normal?
Two questions: I'm here because my husband was recently diagnosed with PF. What do you all do to get meds for this? His doctor suggested ofev which is $3900 a month. He is a veteran so they are trying to get help that way, but we don't know what to do in the meantime. Also, I just started asthma treatment and the doctor prescribed 20 mg prednisone for five days. I am in great pain from it, so after four days, she said to stop taking it, but now 3 more days and my back, chest and stomach hurt so much. Is this normal?
Hi Mary @maryflorida, It's hard for me to imagine the stress of having to deal with the costs of some of these medications. I don't know if this will help but I did see this article from 2017 talking about strategies to manage costs.
Hi Mary @maryflorida, It's hard for me to imagine the stress of having to deal with the costs of some of these medications. I don't know if this will help but I did see this article from 2017 talking about strategies to manage costs.
Thank you, but I don't know how to even ask them. My husband does not know this is as serious as it is, and I am not strong enough to tell him. We are only on Social Security, and our kids would help but they are not wealthy. What do the others in this link do? Are they all wealthy?
Thank you, but I don't know how to even ask them. My husband does not know this is as serious as it is, and I am not strong enough to tell him. We are only on Social Security, and our kids would help but they are not wealthy. What do the others in this link do? Are they all wealthy?
Mary - You can start by reading here: https://www.ofev.com/financial-assistance or here: https://scbn.org/
Bothe organizations assist with reducing copays of high-cost medications for people with limited income.
I'm sure there are others as well.
Sue
Thank you, but I don't know how to even ask them. My husband does not know this is as serious as it is, and I am not strong enough to tell him. We are only on Social Security, and our kids would help but they are not wealthy. What do the others in this link do? Are they all wealthy?
I think it would be worth having a discussion with your state or county VA rep to check for your husbands benefits or eligibility. I know the county I live in has a VA rep who helps veterans get medical services or information. It looks like OFEV may be covered or part of the VA's treatment for pulmonary fibrosis -- "2015 — Nintedanib is indicated for the treatment of idiopathic pulmonary fibrosis (IPF). Dosage Form(s) Under. Review. Capsules containing 100 or 150mg nintedanib." -- https://www.pbm.va.gov/PBM/clinicalguidance/drugmonographs/Nintedanib_OFEV_Monograph.pdf
Also, here is a link to the VA Pharmacy Benefits Management Services that might provide some answers - https://www.pbm.va.gov/
I think it would be worth having a discussion with your state or county VA rep to check for your husbands benefits or eligibility. I know the county I live in has a VA rep who helps veterans get medical services or information. It looks like OFEV may be covered or part of the VA's treatment for pulmonary fibrosis -- "2015 — Nintedanib is indicated for the treatment of idiopathic pulmonary fibrosis (IPF). Dosage Form(s) Under. Review. Capsules containing 100 or 150mg nintedanib." -- https://www.pbm.va.gov/PBM/clinicalguidance/drugmonographs/Nintedanib_OFEV_Monograph.pdf
Also, here is a link to the VA Pharmacy Benefits Management Services that might provide some answers - https://www.pbm.va.gov/
Thank you again. Mayo said they will try to get him in for a PCP since he has so many issues. hoping/praying. My daughter just sent me these two links also, just in case.
Mary - You can start by reading here: https://www.ofev.com/financial-assistance or here: https://scbn.org/
Bothe organizations assist with reducing copays of high-cost medications for people with limited income.
I'm sure there are others as well.
Sue
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We found out in Feb.of this year my husband has IPF.He had a biopsy and that was how they found.We were just like you we were devastated.The pulmonary Dr.helped us with a Pharmaceutical Company and was given a grant for a medicine called OFEC,which is a clinical trial and it is suppose to slow the progession of IPF down.Without the grant we could never afford the medicine at 94000.00 a year.The side affects of the Ofec,are terrible but what else do you do.Through alot of sick times we have found a nap everyday and diet and exercise helps alot.Keep faith and take one day at a time that is what we do.Prayers for you.
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Helpful -
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1 ReactionHi, any update on taking Ofev? My doctors suggested me to give it a try. I’m hesitant, I’m 40, my lung disease hasn’t progressed in years, although, I don’t have much reserve. Ofev was just approved by fda in September for my condition and i feel like a experiment,, and this scares me. Any advice is appreciated..
-
Like -
Helpful -
Hug
1 ReactionYes, I have IPF as well. My Pulmonologist discussed OFEV with me and given the restrictive cost and the fact it is not a cure but a means to slow the disease's progression, and that it has some pretty lousy side effects, I opted out.
I was diagnosed in 2018. Like Larry (2012) I packed up my statin prescription because of what I read about the possible connection between statins and IPF. No change in my life style since then and, while not a clinical determination, I feel no worse than I did before. Now, Dr. wants me back on statins because of increased cholesterol issues. We'll see how that goes. The big question is, which one will get me first - failing lungs or clogged arteries?
As mentioned, I have been reading a lot about my IPF. Recently, I came across some interesting research done by the University of Alabama, Birmingham describing a reversal of IPF in a patient taking Metformin, an "ancient" drug used to control blood sugar. This may sound funny but, I'm glad I was also recently diagnosed with Prediabetes because, I am now on Metformin. So, time will tell. Based on statistics given on several sites, I am among the cohort with the least time, as I am over 70. I am now 12 months post diagnosis and the average is 14 months for folks my age. If I remember, and am able, I will update on my progress, particularly with respect to any Metformin related stuff.
I am still moving snow, and have an active life but, I believe I owe my continued strength to my Creator and prayers of my fellow Christians. With regard to using medicines, as Jesus said, "Be it unto you according to your faith".
-
Like -
Helpful -
Hug
1 ReactionTwo questions: I'm here because my husband was recently diagnosed with PF. What do you all do to get meds for this? His doctor suggested ofev which is $3900 a month. He is a veteran so they are trying to get help that way, but we don't know what to do in the meantime. Also, I just started asthma treatment and the doctor prescribed 20 mg prednisone for five days. I am in great pain from it, so after four days, she said to stop taking it, but now 3 more days and my back, chest and stomach hurt so much. Is this normal?
Hi Mary @maryflorida, It's hard for me to imagine the stress of having to deal with the costs of some of these medications. I don't know if this will help but I did see this article from 2017 talking about strategies to manage costs.
Strategies to Manage Costs in Idiopathic Pulmonary Fibrosis: https://www.ajmc.com/view/strategies-to-manage-costs-in-idiopathic-pulmonary-fibrosis-article
Hoping the VA can help with your husband's treatments.
Thank you, but I don't know how to even ask them. My husband does not know this is as serious as it is, and I am not strong enough to tell him. We are only on Social Security, and our kids would help but they are not wealthy. What do the others in this link do? Are they all wealthy?
Mary - You can start by reading here: https://www.ofev.com/financial-assistance or here: https://scbn.org/
Bothe organizations assist with reducing copays of high-cost medications for people with limited income.
I'm sure there are others as well.
Sue
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Like -
Helpful -
Hug
1 ReactionI think it would be worth having a discussion with your state or county VA rep to check for your husbands benefits or eligibility. I know the county I live in has a VA rep who helps veterans get medical services or information. It looks like OFEV may be covered or part of the VA's treatment for pulmonary fibrosis -- "2015 — Nintedanib is indicated for the treatment of idiopathic pulmonary fibrosis (IPF). Dosage Form(s) Under. Review. Capsules containing 100 or 150mg nintedanib." -- https://www.pbm.va.gov/PBM/clinicalguidance/drugmonographs/Nintedanib_OFEV_Monograph.pdf
Also, here is a link to the VA Pharmacy Benefits Management Services that might provide some answers - https://www.pbm.va.gov/
Thank you again. Mayo said they will try to get him in for a PCP since he has so many issues. hoping/praying. My daughter just sent me these two links also, just in case.
https://www.pharmacychecker.com/nintedanib+ethanesulfonate/https://www.pharmacychecker.com/pirfenidone-
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1 Reactionok thanks. This is a rough time, just trying to see what can be done and what cannot be done.
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