Searching for Treatments

Up until September 2013 the Lung specialist attending my case had prescribed Prednisone and Azathioprine in equal doses. Prior to September I was attending this fellow Wellington surgery once every two months or so. In December 2013 I advised this fellow the side effects of the above two drugs was having a detrimental effect on my general health and simultaneously having zero effect on adequately constraining the advance of my IPF ( Fibrotic version) Facial features became extremely distended along with overall body mass and of particular concern to me was the apparent increase of fatty deposits around my heart liver and lungs.

Our wellington fellow advised the treatment he’d administered was a standard approach to treatment for IPF. There was no other treatment options available and life expectancy extension was all we could plan for. I was apparently too old for consideration for lung transplant when the time came about a later stage of my IPF. Even if transplant was an option the drugs regime any recipient was obliged to take to ensure the transplant continued to function, was in most cases more oppressive then Prednisone and Azathioprine!.

Along the journey I have continually researched various IPF drug options prescribed overseas.

In June 2014 I stopped taking P & A altogether. I allowed a return to normal body mass through exercise and diet before embarking in August 2014 on firstly a bucket load of “natural remedy pills” imported from America simply to see whether the options these were touted to present worked for me – they didn’t although the Vit D which formed part of the treatment did slightly improve my overall wellbeing.

Simultaneously to the taking the above natural remedies I came across information from the UK and Canada which explained the trials and results of Pirfenidone 200 ( Perfinex). This drug has been administered overseas since 2011. Whilst there are endless reports from various sources regarding the effectiveness in certain patients with varying stages of IPF who are using Pirfenidone I decided anything apart from the dreaded P & A treatment was certainly worth a crack. There is an alternative which is touted an being more effective, this being Nintedanib 150. ( I have not delved into its usage mainly because it appears this drug is still being tested in human trials).

My experience using Pirfenidone since early September 2014 has been positive as confirmed through the breathing tests results I have which are available through various Hospitals with the correct and accurate breathing testing equipment. Lung capacity has improved by a reasonable margin - 2%, Air expulsion has also improved and my oxygen conversion into the blood stream seems stable at 98%. ( I refer to the little gizmo the nurse clamps onto one of your pinkies) I have lost all the obese features that P& A inflicted and I feel quite chipper since taking the Pirfenidone. I am 67 y/o. Friends of their own volition have commented I appear more healthy. It would seem in my case Pirfeindone has assisted my IPF. Diet and exercise play another important part.

I’ve considered my present condition as I write this note.

The initial diagnosis was confirmed via scan at public hospital in Wellington where the little white lines were very evident in the bottom portion of both lungs. At the time the initial scan was done the images showed up an odd pouch of crap on the front of my heart. The resident heart specialist recommended this be removed fairly promptly. Of my own volition I requested the surgeon also take two samples of my lung tissue whilst delving around my heart In the open chest operation. I did this as the lung specialist had earlier advised me “the best method of confirming IPF” was to take samples of the lungs tissues. The tests for IPF from these tissue tests ( essentially boring a whole in both lungs) proved IPF was indeed present. My recovery from this invasion took 7 months! I should add the operation and associated cost were covered by my medical insurance.

In my case persistent consultation with Dr. Google and now various information sources available on the web I read reports on progress with treatment and the many attempts towards solving this little known / discussed disease. I am unaware of any such medical investigation being done for IPF in New Zealand. Counter to this, Isn’t is great news about recent success regarding Cancer research which is very well funded here. No such fortune for IPF sufferers!.

There are several hoops to go through landing Pirfenidone into NZ. Should any of you wish to follow this drugs treatment I suggest you do your own research and if you wish I am happy to share the accepted routing to importing and costs.

Tell everyone about your progress.