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    • #23681
      Sarv Punj
      Participant

      Hi friends. I am a new member having joined the Forum only yesterday. In my introduction I had stated about my 77 yrs old wife who has been a patient of IPF for the last 8 yrs. She was diagnosed at very early stage of IPF and was put on Prednisine 40 mg daily which was titrated toa maintenance dose of 10 mg which was going up and down according to her need. Later as the disease progressed, she was prescribed Pirfenidone which was slowly titrated from 200 mg 3 times a day to 800mg 3 times a day according to her tolerance. This contained the progression reasonably well for about 4 yrs but then her breathlessness started increasing. The treating pulmonologist advised use of oxygen. Recently she had a severe exacerbatiin of the disease which necessitated hospitalization. This is when NINTEDANIB @150 mg BD was tried on her together with Pirfenidone 400 mg TDS. She is back home and and is continuing this regine for the last one month. She has of course to use Oxygen at 4 to 6 lpm 24×7. She is tolerating Nintedanib without any adverse side effects. However NINTEDANIB 150mg twice daily costs me whopping Rs66000 per month far beyond my capacity. I was wondering if the dosage can be rescheduled at 100 mg TDS which will cost me Rs 50000 per month resulting in substantial saving. Surprisingly Nintedanib 100 mg costs exactly half the price of 259 mg. I have yet to check with her Pulmonologist but meanwhile I thought of raising this issue in the forum in case someone has some experience in this regards. I will appreciate your response. Thanks.

    • #23687
      Ross Harris
      Participant

      @sarvpunj

      Sarv:

      I was diagnosed with IPF on November 12, 2019 and started on OFEV on November 29, 2019. My dosage has remained at 150 mg, thus far. Talk to your wife’s Pulmonologist to find out if there might be a drug sponsor program available for her.

    • #23688
      John Kane
      Participant

      Call the manufacturer and ask about an Assistance Fund.

    • #23690
      Donald Salzberg MD
      Participant

      Hello Sarv. I’m on IFEV 150 2x/day. A lower dose is less expensive but more advanced cases may benefit from the 150 bid. Idk. I know the OFEV Open Door has been helpful on this. The phone number is:

      866-673-6366id go there and see if they can help.

      Don Salzberg, MD

    • #23693
      Sarv Punj
      Participant

      Dear Dr Salzberg,
      Thank you very much for providing the contact details of OFEV Open Door, I will surely try to call them. I believe the number given by you is U S number. You also mentioned that 150 mg bid is more beneficial. I wanted to know if 100 mg three times a day (ie total dosage for the day is 300 mg) will give the same benefit or not because this means substantial saving in cost. Thanks again.

    • #23700
      Donald Salzberg MD
      Participant

      Hello again. From what I’ve read the maximum dose is 300 mg/day. If there is liver dysfunction or excessive issues with diarrhea, nausea etc—the dose recommended is 200 mg/day. I think 100 mg 3x/day shouldn’t be an issue vs 150 2x/day especially if your cost is so beneficial. In this country the retail cost (150 bid) is about $20,000 USD/month but the “insurance discounted cost” is about $10-12,000/month. But if there is significant side effects—likely consider 200/day but I’m not a pulmonologist. I used to get nausea 1-2 hours after taking a pill and would take sublingual Zofran. Now i take the AM pill with a regular Zofran (8 mg) and i no longer have any nausea.

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