January 29, 2020 at 10:51 am #22764
I am not usually one to just regurgitate literature, however, a news article recently published on Pulmonary Fibrosis News caught my eye. It talks about the prognosis of idiopathic pulmonary fibrosis (IPF) and which group of patients tend to do better with this disease and others. Per the article, women and younger people living with IPF tend to have a better prognosis, but not necessarily if they also live with Pulmonary Hypertension or have been on long-term oxygen use/therapy.
I know the clinical course of IPF is highly varied among patients, but many of us become reliant on supplemental oxygen. It irritates me that something we need to manage our disease (and survive!) is associated with a higher risk of death, per the news article.
This article also talks about a European registry for IPF patients (EMPIRE) which is trying to collect data on patients to predict outcomes, understand better prognostic tools and further understand trends among this cruel lung disease. To me, it is interesting to think about all the benefits of patient registries and how the data collected from this tool can be used to help others. Because I am in the subset of people predicted to have a stronger prognosis with IPF (female, young adult) I am going to sign up for a patient registry and ensure my experience is captured in the data.
Are you part of a patient registry collecting data on IPF?
How do you feel about overall prognosis details? Do you think they are accurate, or just a number that many people can outlive?
January 29, 2020 at 6:09 pm #22772JillTParticipant
I’m not sure if there is a registry in Australia.
On the subject of research, you might find this article of interest, Charlene. Posted at our national news organization in response to long term effects of our recent bushfires. Interesting, but very concerning as well.
January 30, 2020 at 10:23 am #22778Rene HakkenbergParticipant
Hi Charlene, thanks for bringing up the IPF prognosis predictions. Obviously a very important issue, especially considering the effect of such a prognosis can have on our mental well being. We all know that a Google search will tell us that the life expectancy is 3 to 5 years after diagnosis. I have no idea how accurate this prognosis is, especially since I believe these figures were published before Ofev and Esbriet became available. How much Ofev and a Esbriet have affected our life expectancy, I believe, is unknown.
One example, a very well known South American singer, el Puma Rodriguez, was diagnosed with IPF in the year 2000 at the age of 57. He continued performing for many years until he no longer could and had to use oxygen. In 2016 he had a double lung transplant performed at Jackson Memorial in Miami. It was very successful and he went back to his singing performances and – to the best of my knowledge – he is still performing, 20 years after his first IPF diagnosis. What happened to the 3 to 5 years prognosis, or is this an exceptional occurrence?
So, it is definitely very important that we get a better and more reliable handle on life expectancies. Registering and giving all our information is therefore highly recommendable.
January 30, 2020 at 4:05 pm #22784
Hi Charlene , Rene and JillT, some time ago we talk about this topic. By the way, Puma Rodriguez, he was singing live here in Santiago last week, his case I think is exceptional, and prove that everybody is different when it comes to this horrible desease, my case for instance : diagnosed back at the end of 2012, took ofev for 2 months, couldn´t handle the side efects. Up to now , I m only on 5mg prednisone and 850mg of metformin per day, some herbs and ginger tea, no o2 yet. Good to bring to your attention, my mother lived 10 years with the desease on Prednisone alone. Best regards from Chile
January 31, 2020 at 6:42 am #22786Jofac O’HandlinParticipant
Hi Jamie, i note that you have been prescribed metformin. Is this for a diabetic condition or for the IPF? The data for the use on IPF was found inconclusive. I tried to get my GP to prescribe but he refused.
You and your mother with IPF, it is me and my sister (deceased) she only survived 18 months from diagnosis. I am 6+ years and on OFEV, but would like to involve other therapies the might stop or reduce scarring like metformin, azt, or statins as indicated in the IPF News. Good luck, Joe
- This reply was modified 7 months, 3 weeks ago by Charlene Marshall. Reason: tagging
February 2, 2020 at 7:59 am #22793
Happy Sunday – I hope you’re having a nice weekend! Yes, I’d read this article too or one very similar, how scary about the damage of the bushfires to our respiratory system and air quality. It reminds me of the foundation that has now been set up for EMS responders of 9/11… many of them ended up with PF after inhaling the concrete during their rescue efforts. I just can’t understand how a higher being of some kind can let something like that happen after all the good EMS did that day. Very frightening.. protecting our lungs is so important as we know. Thank you for sharing.
February 2, 2020 at 8:07 am #22795
Thanks so much for writing and sharing your thoughts on this important topic. As always, it is great to hear from you! I know I have an email outstanding back to you – I’ll try to reply today 🙂
As for the IPF prognosis, I agree, it can have such an impact on our mental health and ability to cope with this cruel disease. One of the things I’ve repeatedly heard since worrying about that “3-5” year prognosis myself is that it is outdated and inaccurate. Of course I thought people were just trying to make me feel better at first by saying it is outdated, but I’ve now connected with many patients who have far outlived that statistic so it must be true. I believe you’re right in terms of this statistic being published before the two anti-fibrotic medications became available – it would be nice to get results of a longterm study on IPF taking both Ofev and Esbriet and compare their survival rates so we can update that hope-killing statistic of only 3-5 years.
I remember you telling me about that singer, thanks for the reminder again. It is stories like this we must hang onto. I sure hope new data is revealed soon so people are less disheartened when they read up on prognosis/life expectancy of those with IPF. I agree with you about patient registries and how beneficial they are!
Take good care my friend.
- This reply was modified 7 months, 3 weeks ago by Charlene Marshall. Reason: tagging
February 2, 2020 at 8:14 am #22798
Thanks so much for writing – I always love hearing from you! Great reminders too about outliving the prognosis of this cruel disease. I wish you and your Mother weren’t plagued with IPF but I am so glad she had 10 years, and that you continue to manage without oxygen yet. I hope this continues for you a long time!
February 3, 2020 at 8:41 am #22809
Hi Carlene , thanks for you words, like I said to Jofac, Im sure you will benefit from the cure for IPF, I´m already too old to see that, but you never know, the cure could come any time from now, lots researching around the globe. All the best for you
February 3, 2020 at 8:41 pm #22808
Hi Jofac, ……just a bit of info. I ve been aroud quite a while with this horrendus desease, passed through several pulmonologists in Canada and Chile, I was on OFEV like you for two months, could´t put up with side effects , Statins for example they give it for inflamation of respiratory track( took it for a month did nothing on me) on the other hand , Prednisone 5mg a day work quite good on me. Metformin I take it becouse I read about it… it was succesfuly tested in rats with PF , not concluded in humans yet, I´m 71… so I said why not try it, will help control my sugar and also it migth help on IPF. so far so good. Hope for the yungsters like Charlene they live long enough to see the cure for this dreadful desease. best regard frieds
February 3, 2020 at 8:43 pm #22824
I hope so too Jaime! There is a lot of great research going on right now for PF/IPF… here’s hoping there is a break through soon and we all can benefit. That will be such a celebration — I am keeping the faith for that! 🙂
February 4, 2020 at 10:02 pm #22841Anne PhilibenParticipant
My pulmonary doctors have all said that I have unusual case. Frankly I think I’m going to die from tripping over my oxygen tubing. Shortly after I developed PH and before I learned to change my activity, I really thought the end was coming soon. Now with increased 02 and decreased activity I am less stressed. I guess either OFEV or Esbriet stopped my fibrosis from increasing. I really wish we had better prognosticators.
February 5, 2020 at 8:03 am #22848
Thanks so much for writing and I couldn’t agree more – we certainly need better prognosticators for this disease! It’s so tough though when it presents and develops so differently in each patient, which is just another whole level of cruel. I’m really glad you found a balance of increased 02 and decreased activity – stress can cause so much harm to our bodies. I’ll keep my fingers crossed that the anti-fibrotic medications continue to stop your fibrosis from developing.
February 5, 2020 at 10:49 pm #22852YvonneParticipant
Yes, I am a part of a patient registry by way of the University of California Davis Medical Center because I signed up to be a part of their research. I figured if by doing so that I could help in any way, it was a good idea.
My genetic testing results came back that my ILD is hereditary and so I’m being put on OFEV. No one has ever discussed any research based findings with me relative to prognosis predictions, or for that matter MY own prognosis has never been discussed with me. I believe I am in the early stages of the disease based on my overall health still. My O2 levels are holding in the 90’s with very little assertion shortness of breath. I’ll let you know if this topic ever comes up.
February 10, 2020 at 9:31 am #22910
Thanks so much for getting back to me! I am coming to California at the end of the month… I sure hope your weather is nicer than it is here 🙂
Thank you on behalf of many patients for your registry at UCDM. I have no doubt it will indirectly help others by allowing physicians to better understand all that we patients are going through. I also am in the midst of registering with my transplant center here, in hopes that it helps me and others.
Have you started the Ofev? I hope the side effects are manageable for you – they are for me, but I know others struggle. I will keep you in my thoughts! Glad to hear your symptoms aren’t too bad, and that your shortness of breath is manageable so far. I’ll keep my fingers crossed that it remains this way for you. Now that you know there is a hereditary link, will you do any further investigating as to others in your family and whether they might develop an ILD?
Talk to you soon,
February 11, 2020 at 11:14 am #22925Richard J ShankParticipant
My American doctor told me this time last year that he wanted me on oxygen 24/7/365. My Chinese friend (who is a doctor in China) simply said, “don’t use”. The Chinese medical community think supplementing oxygen causes the lung cells to age faster which basically leads to earlier death. My American doctor was visibly upset when I told him I would not use the oxygen unless I really needed it. I’ve got the equipment and have never used it.
So far, using Chinese herbal medicine combined with Esbriet, my PF seems to be very stable. I have only been doing these for the past year. Before I used these, my lungs went from 70% down to 49% in a year and a half. My last two tests over the past year were 50% and 53%. I get tested again in March.
I don’t think I’m improving but my quality of life is much better. Before I had an uncontrollable cough and my lungs seemed to be stiff and it hurt to breath deeply. There was also a gross feeling in my throat. Now I feel just like I did before this disease except I can’t keep my oxygen level up with any kind of movement or exercise. Climbing up a flight of stairs causes me to slightly lose my breath. It’s been like that for the past year. Before that year, taking a shower would lead to a 10 minute coughing fit. Now, it’s a 5 second coughing spell.
The Chinese herbal medicine I have been taking is the Wei Laboratories Soup A, Soup B, and LC Balancer. I took that for 3 or 4 months last year. Then I found a Chinese herbal doctor in Seattle and used his medicine until December when he went back to China for a visit. I have been on Wei Laboratories since then. Each has made significant improvements in quality of life. Both had their own strengths. Wei Labs is expensive ($1000 per month) and the other is about $250 per month but tastes horrible. If you just drink it down warm, you can easily get used to it. The Wei Labs pills are easier to use but the capsules are sticky and tend to get stuck in the throat unless you flush them down well with water.
Another thing I use is Nin Jiom Pei Pa Koa. This is a 150 year old Chinese cough medicine. It’s primarily honey with and menthol. It was created by a Chinese herbal doctor for a friend whose mother had a terrible cough. Nin Jiom means in memory of you mother. Pei Pa Koa means loquat syrup. You can get this at Asian markets for about $8 per bottle or on line for about $13 per bottle. It’s good for the cough and healthy for the lungs. Watch out diabetics, its high in sugar. I have had to increase my metformin and glimeperide to compensate.
February 11, 2020 at 2:19 pm #22930BillParticipant
I have ipf and in my 11th year. I am 80 years old with no transplant. So, I guess it’s anybody’s guess as far as prognosis goes. I am on 8 liters of oxygen. Pretty much close to the end of the line.
February 11, 2020 at 4:58 pm #22933Mark KoziolKeymaster
Hello Bill, thanks for sharing. One of thing about this disease that makes it so difficult is the unknown. Doctors don’t always know how the disease is going to matriculate through your body. You may remain stable for another 20 years. Keep your positive attitude going. Take care, Mark.
February 14, 2020 at 10:52 am #22986
Thanks so much for sharing your experience with us re: Chinese herbs vs. 02. I know the “jury” is out on this, as some people don’t believe in the benefit of alternative therapies, whereas others (like yourself) really do. I believe each person is entitled to their own attempts to control this disease and/or beliefs on how it will help them. I’m glad you’ve found something that has improved your QoL… that is so important! I have no doubt others will be interested in what you’ve been doing, so thank you for sharing your experience for them.
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