Forum Replies Created

  • piet-potgieter

    Member
    July 31, 2020 at 12:16 am in reply to: Use of medications bought from other countries

    Nothing wrong with Cipla´s generic of Esbriet made in India. I have been taking it for the last 3 years. Now we may not import it any more as Boeringer Ingleheim registered their Ofev in South Africa and it is unaffordable, even for my medical insurance.   Therefore,  Boeringher Ingleheim are effectively passing the death senctence on to all South African ipf sufferers.  I wrote to their office in Johannesburg, but no reply.

    Our currency, the rand, used to be worth more than the American dollar. Now it is 7 US cents. You can guess why,

  • Die we will. It will just take longer!

    Piet.

  • piet-potgieter

    Member
    April 28, 2020 at 2:11 pm in reply to: Relationship Between Excess Iron & Fibrotic Lung Disease(s)

    Immediately had a blood test done, but no excess iron in my blood. I was diagnosed with IPF in 2017.

    Regards,

    Piet.

  • piet-potgieter

    Member
    April 14, 2020 at 2:21 pm in reply to: Use of medications bought from other countries

    Dear Mick,

    There is most definitely a generic for Esbriet and it is called Pirfenex and made by Cipla in India. If you live in India, you will pay roughly one American cent per tablet. If you live in South Africa as I do, you can import the tablets, but now you pay dollar prices. A year´s supply costs me about $900. I have been using them for the last 3 years. I was diagnosed in January 2017 and told I have three to five years to live. I started using Pirfenex three months later and my condition has not deteriorated. I have the typical symptoms: my oxygen drops to about 88% if I walk fast, but the white spots on my lungs remain the same on the annual CT scan.

  • piet-potgieter

    Member
    August 9, 2019 at 12:56 pm in reply to: Life Expectancy

    Hallo Robert,

    Why don’t you import your Esbriet from India? It will cost you about 60 to 70 American dollars per month. It is called Pirfenex and made by Cipla. I have been taking it for the last just over two years and my IFP is not progressing according to a CT scan in January. I am 74.

  • piet-potgieter

    Member
    August 7, 2019 at 11:16 pm in reply to: Laser Therapy Results

    Congratulations Joseph and Andy!

    Are you on Ovef or Esbriet?

  • Been living with IPF in the Western Cape, South Africa for the last 2.5 years and not aware of any support groups in the country. I see my pulmo every six months and my condition seems to have stabalized, but coughing a lot lately. I take Esbriet (Pirfenex from India).

  • piet-potgieter

    Member
    July 2, 2019 at 2:59 pm in reply to: Exercising When You Have a Chronic Disease

    Cooreta, Steve and Susan,

    We all differ and can take hints from each other. I am 74 and was diagnosed with IPF in January 2017 and went through more than a year of inactivity before I realised that I have to get exercise and lose weight as I might live longer than the predicted three to five years. I started walking further every day and have done up to 10km per day and lost 10kg eating well, but differently by cutting out carbohydrates and eating as much fatty meat and salads as I liked. I even cut out wine for a few months, but now I am back on it and lose weight much slower. I am not on oxygen yet, but my readings on the oximeter drop to 87  when I walk uphill fast. I am on the Indian version of Esbriet {Pirfenex) as Esbriet and Ovef are not allowed in South Africa where I live. The tablets seem to have a stabilizing effect because my CT scan did not show an increase in scarring this January.

    I am going to follow Steve’s advice and start taking vitamin D and Serraptase. I also live in the mountains on a farm Sue, and was near you in Seté and Villefranche three weeks ago. Good luck negotiating the slopes.

    Best of luck to all of us!

  • piet-potgieter

    Member
    June 21, 2019 at 8:31 am in reply to: Laser Therapy Results

    Andy’s last paragraph confuses me: do we eat through our lungs and what is ATP that is produced? How does this Dutchman inhale nano nutrients? @drandyhall?

    Regards,

    Piet.

  • piet-potgieter

    Member
    October 26, 2018 at 12:40 pm in reply to: Pulmonary Fibrosis Symptoms: Fatigue

    Next week I am going for a third sleep test in the past month and they repeat the test every time because they do not seem to be able to find out why I cannot sleep more than four hours at a time and why I am always tired. I told them I have IPF, but they insist they want to do a third test. I am not sure if their test also measures the amount of oxygen in your blood throughout the test period. On exertion my o2 levels fall to about 87%, but returns to 93 when I relax.

  • piet-potgieter

    Member
    September 19, 2018 at 10:35 am in reply to: Hobbies of Our Talented Forum Members!

    You are amazing, Tom. My hobby is to fall asleep in front of the tv and at night I can’t sleep! I do try to do something every day though. We had ravaging fires in January 2017 here in the Western Cape, South Africa, (the month I was diagnosed with IPF and I still remember my hoarse voice at the time from the smoke. My whole farm burned down and I almost lost two buildings. We are now cleaning up and burn or chip the black logs remaining. My hobby today was to fit a hoist to my Landrover to pull the logs on to a heap to burn. I had to cut an opening in the bumper and drill some holes. It took me all day, because I get so tired and have to rest regularly.

  • I live on a farm near Paarl which is near Cape Town in South Africa. Although I was diagnosed more than 18 months ago, I do not know of a support group near me. Please make contact if there are other sufferers near me.