pete-besio
Forum Replies Created
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This is my opinion, and shared by my pulmonologist. The efficacy of OFEV and Esbriet is marginal at best. We chose Esbriet as my treatment medication. Esbriet. Has games a generic form for about a year, which I switched to immediately. Great savings! Then Mark Cuban started his CostPlusDrugs. I am now getting my generic Esbriet through that pharmacy. My cost: $199 for 90 tablets, 801mg. A couple of years ago I paid about $6000 for that same amount. I used to defend Big Pharma. Not anymore. If I were an OFEV user and worried about the cost, I would ask my doc to switch my prescription.
Pete Besio
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I am always curious why Drs. Prescribe OFEV. My opinion is side effects are worse than Esbriet, which I have been taking for 3-4 years.
Hers is info that my tip the scales in the drug choice: I just ordered Pirfinidone (generic Esbriet) from CostPlusDrugs in the US, 90 801mg tablets for $199 plus shipping $5. No, that is not a typo. If I would have stayed at CVS, my Medicare out of pocket would be over $1000. My opinion, shared by my pulmo, is these drugs are marginally helpful, so I will take the $$$ savings!!!
Pete
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Peggy,
I am awaiting delivery of some “D” sized O2 cylinders and a regulator that will provide up to 6LPM, it will do either constant flow or pulsed, user selectable. My calcs show it will provide a little over an hour O2 at 6LPM constant flow. I had to know my stuff to get my O2 provider to believe me that it would help, fortunately I do. This unit is bigger than a normal wine bottle, if you search Amazon you can get the specs 6 lbs, about what my POC w/extended matter ways,fits in a backpack, also avail on Amazon .
I hope to by 12/11. Will post my results when I get it. If you want the dertas on how I got this done, message me privately here and I will summarize it.
Pete
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Steve,
At least the -301 arm is in the US, that is the one I am currently enrolled in. Currently paused, about to withdraw.
I am enrolled at Tampa General Hospital.
I thought -305 arm was IS also, but it’s been a while since I looks at that one.
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Peggy,
by Phase 3, I am referring to the phases of clinical trials. Trials progress from Phase 1 through 3, Phase 1 being very early, Phase 3 being final phase. This process is exceptionally long and I am not an authority, but most Phase 3 trials are a year long, it can take years to get suffficient enrollment on top of that. I am not counting on any medication to be available to the public in time to help me. I have had this opinion validated by medical professionals.
Getting sufficient supplemental oxygen is a challenge. I recently attended the PFF Summit, hosted by the Pulmonary Foundation and proper supplemental O2 availability was a topic. I have been working toward getting enough O2 to allow me to exercise well enough to extend my current circumstances. O2 cylinder volume at a constant flow presents a challenge, and the “wine bottle” size doesn’t offer a lot of volume. I am still working on my quest, i will keep you posted as I learn more. I suggest you look into higher flow pulse regulators, I met a guy that uses 5LPM pulsed, and he is working out HARD. He is a triathlete, and his DLCO is 31% of expected, a pretty low number. Also, you might look into liquid oxygen, which i am learning is hard to get.
On the cardiac/pulmonary hypertension topic: I recently had my aortic valve replaced. It is a little early for me to give my final verdict on it, but the early results are really positive. The cardiology peice of the puzzle was contributing to my malaise.
Keep up the fight, I will keep you posted on my results.
Pete
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Peggy
I was referring to this column posted in PF News
TETON PPF study of nebulized Tyvaso enrolls first patient (pulmonaryfibrosisnews.com)
I was diagnosed with IPF in 2019, with the attendant decline in my health since then. I am throwing every tool I can find at the disease to preserve my quality of life as much as possible. One of those tools is enrolling in clinical trials. The Teton trial is my third. I do trials for two reasons: to do what i can to help the community find a cure, and in the hopes that I will not be on a placebo in the trial and perhaps I will be administered an effective drug well before it is available in the market place. With that being said, I am about to disenroll from the Teton trial. I was originally excited about the inhaled application, i liked the idea of applying the medication directly to the affected area. But the drug administration process was cumbersome and doesn’t fit my lifestyle. I understand there is a new administration method for Tyvaso that is less cumbersome, but I don’t think it is near ready for a trial on IPF.
One last thought on trials: I chose to enroll in Phase 3 trials only, at phase 3 it is my understanding that these medications have shown enough promise to offer a glimmer of hope, and to be blunt, my time is limited.
If i were to offer advice it would be to fight you condition like your life depends on it, gain as much knowledge as you can about it, and be a very strong advocate for yourself within the health care system. I have the very good fortune of having a healthcare team that listens to me, and are willing to execute things i suggest if the make sense. But they have many responsibilities, and nobody cares about me as much as I (and thankfully my wife) do.
pulmonaryfibrosisnews.com
TETON PPF study of nebulized Tyvaso enrolls first patient
The study will evaluate how safe Tyvaso is versus a placebo and how well it improves lung function in up to 698 adults, 18 and up, with PPF.
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Per clinicaltrial.gov, this is phase 1b/2a:
Study Record | ClinicalTrials.gov has info on this trial.
I am currently on my 3rd clinical trial. My understanding of the trial process is it starts at Phase 1, and proceeds to phase 2 then phase 3. The early phases are as much to test safety as they are to test efficacy. I am on my 3rd Phse 3 Clinical Trial, all of them have had a duration of 1 year, which i believe is common for phase 3 trials. I am a curious participant in these trials, and I seek info from those administering the trials. I have had the fortune of working with some very experienced people. My understanding is that once at the end of the dosing phase of a clinical trial, data is analyzed. As you might imagine, this is a very involved process. It is likely to take years after the conclusion of a clinical trial before a drug becomes available. Yes, exceptions exist (COVID vaccine). There has been some movement on accelerating this process for IPF patients, thankfully.
My guess is it will be quite some time before Saracatanib becomes available to us, and this is true of many of the promising drugs we see posted on these forums. I am not trying to rain on anyone’s parade here, we all could use whatever hope we can find. But in my strategy for dealing with IPF, personally, I need to have realistic expectations.
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I think that is a question for your physician. It is a Phase 3 trial, to me that indicates it has shown promise. Personally, I am throwing everything I can at IPF to slow it down. My personal goal is to make to the open label so I can use it in my battle. I also have about 6 months to go. Good luck!
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Yes to what Adele said. I am on my 4th trial, never new what I was getting, that’s the standard procedure. On trial did have an open label extension, in which you do get the study drugs. That trial was cancelled due to lack of drug efficacy. Currently on the Tyvaso trial, mostly in hope that I will make it through the trial and get to the open label after I am done!
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Mark,
Do you take the 2000IU all at once or multiple times daily?
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Emily,
May I ask: were you prescribed Tyvaso to treat pulmonary hypertension? I am curious.
Also, I am about to start a new thread on the following. I too have been on 10 mg of Prednisone, perhaps for 3-4 months. I found it to be really helpful to my general well being. a few weeks ago, I noticed feeling extremely lethargic, borderline depressed. I remembered the conversation with my pulmonologist when we decided to begin the regular Prednisone dose, he recommended taking a Vitamin D supplement, which I did. I was trying to figure out why i was so lethargic, did some internet sleuthing on Vitamin D deficiency, and sure enough lethargy and depression are symtoms. At my regularly scheduled pulmonologist appointment, I asked about it. He said he didn’t know much about vitamin D deficiency, but ordered a blood test. And told me to get more excercise, spend more time outdoors. Went and had blood drawn, and before getting the results increased my Vitamin D supplementation from 800IU to 1600IU and increased excercise and outdoor activities. I VERY quickly started feeling better. When I got test results back, sure enough, I was very low on Vitamin D. Just had another blood draw today to see what current levels are, but I feel WAY better. Vitamin D, who would have thought it could make such a difference!!
Pete Besio
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I am being evaluated for participation in the Teton (Tyvaso) study.
&Manzurul: did you mean to say that the side effects are noticeable?Pete
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I have had good results with Prednisone. Earlier this year I started taking 40 mg/day for events that required energy on my part (travel, family visits, etc). While it greatly helped my energy level, I felt jittery and definitely had trouble sleeping. But I felt the benefits outweighed these effects. My pulmonologist was resistant to putting me on a regular regimen but was sympathetic to the benefits it provided me. We proceeded to trial various doses to determine a beneficial dose. We share the opinion that the minimum effective dose is the proper path, but I have been pretty clear with him that I am most interested in in the QUALITY of my life, not the QUANTITY. After a few months of trialing, it seems to me that 10mg is the right dose. I will boost it to 20mg on occasion. Each of us has specific individual reaction to IPF and our medications, but I have had great results with Prednisone and encourage evaluating it as part of your treatment regimen. BTW, I find it WAY more helpful the Esbrit/Pirfinidone and it is WAY cheaper.
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I have been enrolled in PRM 151 for around 18 months, I had progressed to the open label portion of the trial, where I was being given the drug. I had my second to last visit yesterday, as the trial has been cancelled. Reason given for the cancellation is lack of efficacy of the drug, my experience backs that up, I haven’t felt much different since being on the open label portion, although have only received 3 injection of what we could be sure was the actual drug. The trial nurse was clear that the trial was being cancelled becausee analysis showed the drug was not working, not because of any unwanted side effects or adverse reactions. I am now looking for my next trial.
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David,
The biopsy did tell you what kind of PF you have. IPF: Idiopathic (no known cause) Pulmonary Fibrosis. The importance of this diagnosis in the US is that it allows patient to be prescribed one of two drugs to slow the progression down.
My biopsy was smooth, I should have done it sooner. -
15 years is awesome, and let the be an informative piece of information to newcomers to the group. If your pulmonologist is indicating a 2-4 ( or more commonly 3-5) year life expectancy, it is time to find a new pulmonologist. That data predates the approval of OFEV and Esbriet, which have been available for a long time. We regularly see people in these forums that have live much longer.
congrats on 15 years, I plan on achieving that milestone too!
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At the beginning of my IPF journey, I was an extremely fit human, riding my bicycle an avg of 5000 miles per year. When in the hospital recovering from my lung biopsy, the respiratory therapists were impressed with my lung volumes. When I shared this with my pulmonologist on the follow up visit, he said my volumes were indeed great….but volume isn’t our problem. It is the amount of scar tissue on our lungs that impede the O2/CO2 exchange that is the problem.
With that being said, I am still a believer in lung exercise. I am still able to get mine on a bike, but anything helps. Might have to take up the harmonica though, my guitar and ukulele playing doesn’t seem to aggravate my wife enough….
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Linda, I just searched the forums for eperisone and came up empty. Can you share what you are referencing?
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I want to provide an update to my previous post on cost of generic Perfenidone. I recently submitted a new order to eCVS Specialy and was pleasantly surprised when I received the bill. Full charge for this prescription was $5,700.92 (down from $9130/58 last month). My Medicare share $285.04 (down from $456.52). This is closer to the cost savings i was hoping for with a generic! I hope my most recent bill is the “real” pricing and that CVS isn’s using a “random number generator” for my prices!!
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I posted this on another thread also. I received my first order of generic Pirfenidone today. Yes, it’s cheaper than Esbriet, but I was hoping for more. In ballpark figures, Esbriet 90 day supply of 801mg is around $$11,500, my share on Esbriet $550. Generic Perfenidone cost is $9500, my share $450. Glad to save $100, but even the generic is pretty expensive. I don’t qualify for any of the aid,so the $0 copay is not an option.
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My first order of the generic will be here this week, from CVS Specialty. Imagine my disappointment when my copay only went down to $440 or so(from $550), on Medicare. The full price is over $9K, compared to over $11K for brand name. I mean, I will take the savings, but I was hoping for an lot more.
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Sylvio,
I don’t have any input regarding the effects of altitude on life expectancy of IPF patients.I do have input on the “3 to 5 year” life expectancy however. The 3 to 5 year expectancy data is very dated. My IPF diagnosis was provided to me by my pulmonologist, and confirmed by 2 additional pulmonologist. All 3 of these doctors informed me that current medications (OFEV and Esbriet) and current treatment regimens generally provide a significantly longer life expectancy. With that being said, IPF effects each of us differently, including our life expectancy.
Best Regards,
Pete Besio -
@lnour
I too am very interested in stem cell therapy as an IPF cure. When I was participating in the Galapagos GLPG1690 trial, the clinic that I was working with had someone drop out of the trial because they were pursuing stem cell treatment. The clinic echoed the thoughts that Ben posted.There is a clinical trial currently underway on stem cell treatment, being conducted in Chapel Hill NC in the US. I contacted them to see if I could participate, but their advice was it is difficult to participate in this trial if you are not local (I am in Florida). Info on the trial can be found here:
https://www.clinicaltrials.gov/ct2/show/NCT04262167?id=NCT03865927+OR+NCT04598919+OR+NCT04262167+OR+NCT04552899+OR+NCT02019641&draw=2&rank=3&load=cartBest Regards,
Pete Besio -
Corgilover,
I get a bit of stimulation/energy boost when I bump the dose. So for normal, day the 10mg is fine. The increased dose is my “turbo”. And yes , my doc is OK with it. He and I have had an ongoing discussion, and we have jointly come up with this plan. I am very fortunate to have found a doc that listens and works with me.