Libby Fisher

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]

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]

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]

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]

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]

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]

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]

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]

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

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]