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.

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 m…[Read more]

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 s…[Read more]

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…[Read more]

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 i…[Read more]

Linda, I just searched the forums for eperisone and came up empty. Can you share what you are referencing?

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 sav…[Read more]

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 p…[Read more]

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.

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…[Read more]

my win this week was…I celebrated my 67th birthday yesterday by riding my bicycle 67.2 miles, continuing a tradition I established on my 60th birthday of riding a mile for every year of my age on my birthday. I have always looked forward to this tradition, it is both a lot of fun and a significant accomplishment. As my birthday approached, I was…[Read more]

@@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…[Read more]

We all have PFTs done…..I like this youtube video explaining PFTs

Charlene,
I too have seen the Tyvaso information and it is on my radar too. It looks like there is a clinical trial evaluating the efficacy of Tyvaso in treating IPF about to start. As I think you have previously noted, your probably not eligible to participate, as age is one of the criteria for exclusion. The drug named in the trial is…[Read more]

Well Ron…there isn’t much I can add to THAT other than ot second that emotion (yes I am quoting Smoky Robinson). I am pretty hopeful and thankful as well, but we all have days…I will print you post out…sometimes we need a reminder to be thankful. That was really nicely written.

Bernard,
I would like to address the concern you raise about only seeing your consultant once per year, and when you are able to see them, they don’t have time to go into depth on your health concerns. As patients, we all wish we could spend more time with our doctors. In reality, the practice of medicine is a business, be it private practice…[Read more]

Ron,
My post was in response to another post by “Anonymous” which has since been deleted by the mods. This post did indeed reference that this person had been cured using the herbal supplements provided by WEI. I was pretty sure the mods would delete that post and was hoping they would delete mine to, because without that post in the…[Read more]

@Anonymous – I am a wise guy, and I had concocted a tongue in cheek answer to your post, but I decided not to soil the dignity of the forum by posting it. Anonymous? Inactive? Miracle cure? hmmmmmmmm