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  • I have gone through some of the correspondence on the need for Oxygen. I would like to share my experience as I am closely monitoring the condition of my wife. It’s true,Oxygen requirement for individuals suffering from IPF or other COPD disease is unique to individuals. My wife started using oxygen about 1 1/2 yrs back @ 2-3 lpm constant flow h…[Read more]

  • Sarv Punj posted an update 1 month, 1 week ago

    @charlene-marshall
    Hello Charlene,
    I have been going through various issues relating to IPF but right now I am getting concerned with alarming issue of Pulmonary Hypertension as a sequel to IPF. As you know, my wife is a patient of IPF for the last about 8yrs. She was first hospitalised in Feb this year for 10 days. On return from hospital we…[Read more]

    • Hi @sarvpunj

      Thanks so much for writing and my apologies for the delay in replying. Unfortunately, secondary development of Pulmonary Arterial Hypertension (PAH) is not that uncommon for patients with IPF. The lungs work really hard in patients with a lung disease, sometimes overworking/putting pressure on the heart. As I’ve mentioned previously,…[Read more]

  • Hi everyone. I was reading some news items elsewhere which said that prednisone is generally not used in IPF patients. My wife however is now taking 35 mg prednisone together with Pirfenidone 800 mg twice daily and is on Oxygen 24×7. We tried to titrations prednisone to 30 mg with the intention of increasing Pirfenidone to 800 mg three times a…[Read more]

  • HiCharlene,
    I read your query about changing the nasal cannula and some of the replies too. As you know, my wife is on Oxygen and uses Oximyzer (pendant type) which has a nasal cannula attached. The manufacturer has specified a months duration for changing the Oximyzer but we feel that it depends more on the upkeep and condition of the cannula.…[Read more]

  • Hello Everybody everybody on the Forum. Various posts on EGGC are very enlightening. I am still not sure which brand of Green Tea Extract I should buy for my wife. There are numerous brands available in India, local as well imported. Also what potency capsules are adequate. I will be grateful if more light is thrown in this regard.
    Thanks.

    Sarv

  • Friends I have read the news about EGCG found to be useful in treatment of IPF. While green tea is easily available, do we have to buy EGCG  (the green tea extract) specially or it is automatically delivered to the body by taking green tea regularly. Kindly educate me on this. Thanks.

    sarv

  • Sarv Punj posted a new activity comment 4 months ago

    Hi Charlene,
    Thank you so much Charlene for the references. In fact I have already got a post from DrandyHall which is very informative. I am forwarding this to our pulmonologist for his perusal . I believe it will be professionally beneficial to him. Thanks again.

    Sarv

    • No problem Sarv, I hope it helps! Goodluck with bringing it to the pulmonologist. If you think of it, let us know what he says 🙂
      Charlene.

  • Sarv Punj posted a new activity comment 4 months ago

    Hi Andrew,
    Thank you so much for giving a personal account of the treatment undertaken by you for IPF. The link sent by you will surely of interest to our Pulmonologist. I am forwarding the same to him. I am greatly obliged for this information.
    Best regards.
    Sarv

  • Sarv Punj posted an update 4 months ago

    Hello friends,
    I read about laser treatment being used for Corona virus and that research might help evolve some treatment for IPF too. I talked to my wife’s pulmonologist who was not aware of this development. He has asked me to share more details about the Later treatment procedure. Could some of the better informed members give some…[Read more]

    • Hi @sarvpunj, the best person to probably help with this/answer any questions is either @caneelbay1 or @drandyhall 🙂 Either of you gentlemen willing to correspond with Sarv about laser therapy? Cheers, Charlene.

      • Hello Sarv,
        I have been using laser therapy for IPF for the last for myself. Have had very good success for IPF, but in no way should laser therapy be considered a cure but another way to manage the disease. I have referred over 300 IPF patients to laser therapy providers worldwide and the vast majority have some subjective and/or objective…[Read more]

        • Hi Andrew,
          Thank you so much for giving a personal account of the treatment undertaken by you for IPF. The link sent by you will surely of interest to our Pulmonologist. I am forwarding the same to him. I am greatly obliged for this information.
          Best regards.
          Sarv

      • Hi Charlene,
        Thank you so much Charlene for the references. In fact I have already got a post from DrandyHall which is very informative. I am forwarding this to our pulmonologist for his perusal . I believe it will be professionally beneficial to him. Thanks again.

        Sarv

        • No problem Sarv, I hope it helps! Goodluck with bringing it to the pulmonologist. If you think of it, let us know what he says 🙂
          Charlene.

  • Sarv Punj posted a new activity comment 4 months ago

    Hello Mark. Great going for you.I thing Lung Transplant is a good option but for relatively younger age group. My wife was not recommended. She is already 77 plus.

  • Sarv Punj posted a new activity comment 4 months ago

    Thank you Mark . It’s rather encouraging that you recovered your lung function by 75% and hopefully you will continue to improve further. This has kindled some hope in us that we can expect similar improvement in my wife’s condion over some time. Thank you again for reassuring.
    Sarv

    • Hello Sarv, I actually have received a single lung transplant. I am currently 4 1/2 years out from transplant and I now have 80% lung function and I feel great. We are always here for you Sarv. Thank you for being such wonderful caregiver! Mark

      • Hello Mark. Great going for you.I thing Lung Transplant is a good option but for relatively younger age group. My wife was not recommended. She is already 77 plus.

  • Sarv Punj posted an update 4 months ago

    Dear Friends
    I have read some other threads in the Forums with interest about patients suffering from IPF and being treated with OFev / Esibret and some using Oxygen too. It is gratifying to note that most patients exhibit fairly good exercise tolerance. My wife 77 1/2 who was diagnosed with IPF 8 yrs ago right in the initial stages and has been…[Read more]

    • Hello Sarv, many people who go through an exacerbation do recover some lung function and some may even get back to where they were before the exacerbation. In my personal experience I recovered about 75% lung function from an exacerbation. Everyone is different, hopefully she will recover the lung function she lost. Take care, Mark.

      • Thank you Mark . It’s rather encouraging that you recovered your lung function by 75% and hopefully you will continue to improve further. This has kindled some hope in us that we can expect similar improvement in my wife’s condion over some time. Thank you again for reassuring.
        Sarv

        • Hello Sarv, I actually have received a single lung transplant. I am currently 4 1/2 years out from transplant and I now have 80% lung function and I feel great. We are always here for you Sarv. Thank you for being such wonderful caregiver! Mark

          • Hello Mark. Great going for you.I thing Lung Transplant is a good option but for relatively younger age group. My wife was not recommended. She is already 77 plus.

  • Hi Sara,
    It is heartening to know that your husband is feeling much better on OFev. Wish him full recovery.You mentioned about OPEN DOOR FOUNDATION . Will it be possible for you to share their email contact so that I could write to them for my wife who is suffering from IPF for the last 8 yrs. She was hospitalised this February for 10 days after…[Read more]

  • Hi Charlene,
    Thank you very much for your prompt reply. I can understand what you said. Different persons may have different experience with the drug. My wife however refuses to restart OFev , In fact presently she is off Pirfenidone too on Doctor’s advice and taking only Omnacortil 30 mg once a day. We shall restart Pirfenex (Pirfenidone) as s…[Read more]

  • Sarv Punj posted a new activity comment 4 months, 2 weeks ago

    No worry Mark. I have ordered Kidney and Lever Function tests today which might be helpful in deciphering her problem. Thanks.

    • Hell Sarv, I hope everything turns out good and they are able to diagnose what is causing her discomfort. Take care, Mark.

  • Dear Friends. I am from India. My wife who has been suffering from IPF for about 8 yrs and was doing well with Pirfenidone 800 mg three times a day and 10 mg omnacortil daily but after about 4 yrs of this treatment her breathlessness started going up and she had to use supplemental oxygen @ 2-3lpm day and night.This kept her going but with much…[Read more]

  • Sarv Punj posted a new activity comment 4 months, 2 weeks ago

    Thanks Mark. As I said before my wife was on both OFev and Esbriet concurrently but since she has been feeling very low for the last 3-4 days , the first reaction was that the only change in medication is addition of Ofev which could have caused this indisposition and she stopped OFev.I called her Pulmonologist who has advised to stop both OFev…[Read more]

    • Sorry about that Sarv. I must have mis read your comment. Hopefully they can get the chemistry aspect correct and get your wife feeling better. Take care, Mark.

      • No worry Mark. I have ordered Kidney and Lever Function tests today which might be helpful in deciphering her problem. Thanks.

        • Hell Sarv, I hope everything turns out good and they are able to diagnose what is causing her discomfort. Take care, Mark.

  • Hi Magan,
    It’s really enlightening how patiently you dealt with your late dad’s illness during his last five months. I have read the thread partially though but seem to have gained a lot. I am 81 and my wife is in late 77 yrs and is suffering from this life threatening IPF. I admire your courage too to have gone through the pain of losing your dad…[Read more]

  • Sarv Punj posted a new activity comment 4 months, 2 weeks ago

    In continuation of my post above, I want to add that I am not really convinced as to why Nintedanib 150 mg bid can not be replaced by Nintedanib 100 mg three times a day , since the total dosage for the day remains 300mg and better distributed over the day in 3 doses of 100 mg each.

  • Sarv Punj posted an update 4 months, 2 weeks ago

    Friends, as I have reported in my previous posts, my wife is on Nintedanib 150mg bid + Pirfenidone 400mg TDS and Omnacortil titrated to 20 mg od for the last over one month. Till now she did not feel much difference in her general disposition. Instead for the last week or so she got multiple blisters in her tongue which made it difficult for her…[Read more]

    • In continuation of my post above, I want to add that I am not really convinced as to why Nintedanib 150 mg bid can not be replaced by Nintedanib 100 mg three times a day , since the total dosage for the day remains 300mg and better distributed over the day in 3 doses of 100 mg each.

    • Hello Sarv, both of the medicines are anti-fibrotic medicines. Technically they operate in the same manner but they each have their own set of side effects. They were both approved in October of 2014. I chose the Nintedanib (Ofev) because this I thought the possible side effects better suited my lifestyle. The Esbriet has sensitivity to the sun…[Read more]

      • Thanks Mark. As I said before my wife was on both OFev and Esbriet concurrently but since she has been feeling very low for the last 3-4 days , the first reaction was that the only change in medication is addition of Ofev which could have caused this indisposition and she stopped OFev.I called her Pulmonologist who has advised to stop both OFev…[Read more]

        • Sorry about that Sarv. I must have mis read your comment. Hopefully they can get the chemistry aspect correct and get your wife feeling better. Take care, Mark.

          • No worry Mark. I have ordered Kidney and Lever Function tests today which might be helpful in deciphering her problem. Thanks.

            • Hell Sarv, I hope everything turns out good and they are able to diagnose what is causing her discomfort. Take care, Mark.

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