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Libby Fisher

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@travelingnana

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    Libby Fisher replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 9 months ago

    Hi Thom and Karen..  I am getting my Ofev from Accredo.. they have very good customer service, but I sure haven’t gotten a break of any kind.  I am paying $550 per month …that’s my Medicare co-pay.  The first two months we were in the “donut hole” and had to pay over $2000 per month.  Outrageous is an understatement.  The $550 is tolerable, but…[Read more]

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    Libby Fisher replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 9 months ago

    Re purchasing Ofev from India:  I did a quick search on the forum site and it brought up our thread a few months ago on this issue.  The posting from Thom indicated he had an Indian doctor when he was first diagnosed who alerted him to this possibility.  Thom, if you are on the forum, would you please offer any additional information .. Are you cu…[Read more]

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    Libby Fisher replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 9 months ago

    Hi Karen,

    I am new to IPF and Ofev myself.  I am just starting my 3rd month of being on Ofev.  I can tell you that it’s still really expensive even on Medicare — my copay is just over $500 per month which is outrageous.  We can only hope that some politicians in our future will take on Big Pharma and  their lobbyists and break their str…[Read more]

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    Libby Fisher replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 9 months ago

    Hi Kathy,

    I was so interested to read your note about your physician recommending a fiber supplement to help counteract the diarrhea.  I have had episodes of IBS for a number of years and I used to take fiber all the time.  Since I haven’t needed it lately, I completely forgot that it can be very beneficial to slowing down your digestion and h…[Read more]

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    Libby Fisher replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 10 months ago

    Charlene,

    Thank you for that reminder about the sublingual Imodium.. Can you purchase it right at the drugstore or Target kind of store?   I get the picture from all the various postings that living on these drugs is a constant adjustment process!  And everyone’s reaction is completely different and we all have such different symptoms from day to…[Read more]

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    Libby Fisher replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 10 months ago

    One more thing to add to my post about preventing or combating diarrhea.  My pulmonologist told me to not be afraid of taking the Imodium.  She said to start out taking it regularly and then see how I reacted.  So for the first 3 weeks, I have taken 1/2 Imodium with each OFEV and it has worked really well for me — no diarrhea at all – – it has no…[Read more]

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    Libby Fisher replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 10 months ago

    I am wondering how common it is for the OFEV to cause blood pressure to rise?  I’ve been on OFEV just about 3 weeks now and in the past 4 days, my BP is going up.  It’s the weekend so I’m not going to panic and call urgent care .. .just took some baby aspirin and will contact the doc on Monday.  But is this common?  My BP has been in a very goo…[Read more]

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    Libby Fisher replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 10 months ago

    I have been taking OFEV 100 mg for 3 weeks and am doing better than I anticipated.  I normally have a very sensitive stomach, so I was prepared for the worst — stocked up on plenty of Imodium, saltines, gingerale, etc etc. I think because I have dealt with IBS in the past, I might be a little more familiar with helpful supplements than most…[Read more]

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    Libby Fisher replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 11 months ago

    Thanks for the helpful hints!  I’ll let you all know how it’s going soon!

  • Profile picture of Libby Fisher

    Libby Fisher replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 11 months ago

    I will be starting OFEV this week.  Of course I am a bit anxious just thinking about all the potential side effects, but I want to get going on the drug so that I can get into a routine, know what foods work best, etc.  My doctor is starting me out on the lowest dose possible, just 100 mg once a day, to make sure I tolerate it.  Does anyone fi…[Read more]

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    Libby Fisher posted a new activity comment 2 years, 11 months ago

    Thank you Mark. I’m really happy to find the forums and find so much information, suggestions for coping and succeeding ! I haven’t even received my first Ofev shipment yet, after a switch between specialty pharmacies who are approved by my insurer. Lots to learn and I’m glad for all the ideas here!

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    Libby Fisher became a registered member 2 years, 11 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 11 months ago

      Hello Libby, we are delighted to have you as a member of the pf forum. Welcome!

    • Profile picture of Libby Fisher
      Libby Fisher replied 2 years, 11 months ago

      Thank you Mark. I’m really happy to find the forums and find so much information, suggestions for coping and succeeding ! I haven’t even received my first Ofev shipment yet, after a switch between specialty pharmacies who are approved by my insurer. Lots to learn and I’m glad for all the ideas here!

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