Just got approved for Ofev

[Charlene Marshall]

Hi John,

Thanks so much for writing and I am glad to hear your insurance approved the Ofev. When you receive the medication, it will come with a package of information for you including tips on how to take the drug, track your doses etc. I find that I don’t need to have a big meal with my evening dose, but I do try to eat several small meals throughout the day (Mark did this too, I remember) so there is consistently something in my stomach then I have dinner. My snack with my evening Ofev dose is usually quite substantial, like cheese, meat and crackers. I don’t like having a lot to eat before bed, but it helps when I eat smaller meals throughout the day. I find this leaves enough in my system for the Ofev to digest. Does this help at all? I’m sure others have lots of tips to share too! I believe protein is tolerated the best with Ofev, but that has just been my experience. @mark-koziol, what foods did you eat when you took your Ofev dose, that was most tolerated?

Take care,
Charlene.

[mark-koziol]

Hello Charlene and John, I was an early riser  so I would take my first Ofev at 6 am and would then take my second dose at 6 pm. John I see you are eating a lil later than dinner time. You could always split your dinner and save a lil bit for a snack or try eating with a banana. There were times I would take my morning Ofev with a banana, I still eat a banana with my meds for transplant. There are a couple that would rival Ofev on the potential damage it could do to your digestive system. My 8 am meds are set in stone for time and usually right in the middle of my workout. I find a banana alleviates any potential problem. I will also use a probiotic yogurt, which I also used with Ofev. Best thing I could say is try a couple of different foods and see how they treat you. Some people don’t get adversely affected. Hopefully you are one of them. Best wishes, Mark.

[john-l]

Thank you both Charlene & Mark for your advice & suggestions & thank you both for all that you do here with these forums.  It has been a learning experience for me & you’ve both been very helpful.  I will keep you posted as I go along…..

[mark-koziol]

Hey John, thank you. You will get through this. Please don’t be intimidated by the Ofev. Keep us up to date. Mark

[marianne]

Congrats John on getting insurance approval for Ofev.  I don’t have any advice for you as I am not taking any meds at the present time.  Hope you have an easy time adjusting to it.

Marianne

[john-l]

Thank you Marianne…..

[cynthia-comery-ferguson]

Do you have to be IPF to get Ofev? I was just diagnosed with ILD last week and they’re doing tests now to identify the disease. They suspect RA and autoimmune. If that’s the case will I be eligible for Ofev?

[peter-goodwin]

Hi Cynthia

 

RA was also the source of my PF, which was diagnosed as UIP (usual interstitial pneumonia.)

Ofev and Esbriet are only tested for use by IPF patients, so are not available to us.

For what it’s worth I have taken a course of Laser therapy, which may prove more effective over time.

[Charlene Marshall]

Hi Cynthia,

Thanks for your reply to this topic thread, although so sorry to hear of your recent diagnosis of an ILD. From what I understand (granted, I am not a medical professional) Ofev is only approved for treating IPF. I don’t believe either of the FDA approved medications (Ofev or Esbriet) are used to treat PF, only IPF. Check with your doctor for sure though. Can anyone else confirm that this is also their understanding?

Regards,
Charlene.

[mark-koziol]

Hello Charlene and Cynthia, Charlene I believe you are correct. Ofev is only for patients who have ipf. I have found nothing as of yet to refute this.

[cynthia-comery-ferguson]

Thanks, Peter. I’ll be sure to inquire about laser therapy.

[suzanne-r-brennan]

I don’t take OFEV anymore as I switched to Esbriet in September last year. However, while I took it for a year, my doctor told me that eight hours between doses was perfectly fine. I would often eat a half of a protein bar with either dose and it helped with the gastrointestinal side effects. So did taking a half dose of liquid Immodium every other day.

[cynthia-comery-ferguson]

Thanks, Charlene and Mark. The diagnosis shocked me because my doctor had previously thought the cough and shortness of breath were a result of sinus issues and post-nasal drip. To go from that to a fatal lung disease was a real punch in the stomach. When the pulmonologist told me what I had I didn’t fully understand the gravity of it all and didn’t know enough to ask many questions. I see him again in four weeks — after he’s received results from blood tests, walking/breathing tests, a report from a rheumatologist, etc. — and I’m preparing a list of questions based on all the research I’ve been doing (and lots of stalking on this site). I’d like to post something asking others what I should be sure to ask during that appointment. On what forum would that be most appropriate? I’m also wondering if I should ask him if I should consult with someone in Boston (Brigham & Women’s) where there’s much more work around this disease than there is here in Providence, RI.

[Charlene Marshall]

Hi Cynthia,

Thanks so much for writing and replying to this topic thread.

Yes I can only imagine how much of a shock the diagnosis was for you. Sadly, that day for me (when I was told I had IPF) is forever etched into my memory; it sure was tough. I hope you’re giving yourself some grace around this news, along with time to process and grieve as needed.

Great idea to prepare a list of questions for the Pulmonologist, and hopefully make it a running list. This way you can add ideas/questions to it as you go along. Kudos to you for being so organized and proactive in your care; we truly are our best advocates!

In terms of which forum to post your topic on questions to ask the doctor, maybe post it in the forum called Upcoming Medical Appointments: Q&As. What do you think?

Regarding the specialist in Boston, it probably isn’t a bad idea. Wherever you can find a centre of excellence, or teams trained in ILDs/IPF specifically, is a good idea to get on their radar. Hang in there and keep us posted on how you’re doing.

Kind regards,
Charlene.

[joe-murray]

Congratulations on the approval! It can be a nerve racking process all by itself!  I started Ofev two months ago and have been religious about timing doses exactly 12 hrs apart with food and water.  Breakfast at 8 is fine when retired as I am but I typically finish dinner by 7 pm and then have my second dose with a banana.  On occasion, I have skipped food (dinner at 7:30 for example) with no ill effect.  Apart for a few bouts of diarrhea, and an few bloody noses, there have been no ill effects to date.  Good luck John.

[Charlene Marshall]

Thanks for sharing this experience with us Joe! I am sure many will benefit from hearing how you’ve managed Ofev with minimal effects. I’ve recently noticed an increase in nosebleeds, but I never thought it might be attributed to the medication. Do you suspect this is your experience; that it is linked to Ofev? Curious to hear! Thanks for sharing 🙂
Charlene.

[marianne]

Just got approved for Ofev but have not started it yet as the cost is very expensive under my plan.  I am going to call pulmonary doctor tomorrow to see if there is some way we can get the cost lower.  Not taking drug until determine if I can get it for a lower cost.

Marianne

[john-l]

Good luck Marianne…Hope they can help find a way to get you the Ofev….

[lks8081]

Hello all,

I just recently joined to be able to post to forums although I have been a member of this group for quite some time.

I was diagnosed with IPF in May 2015, and have been on Ofev since July of that year.  I did experience the diarrhea and nausea within the first 6 months. I occasionally have diarrhea but nothing that immodium can’t handle. I was told by my pharmacist and pulmonologist that taking a dose of immodium with each dose is perfectly fine, but I reccomend that you discuss this with your doctor. Ofev needs to be taken 10-12 hours apart with food. If you have problems with nausea, I would recommend eating peanut butter.

If anyone has any questions please ask. Thank you for allowing me to join this wonderful group!!

[mark-koziol]

Hello Karen, thank you for joining. It makes Charlene and I happy when forum members become active. Thank you for relating your OFEV experience to the rest of the members. Everyone’s experience can always help others. Take care. Mark

[Libby]

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 find that the breakfast dose is easier to tolerate, or maybe the dinnertime dose?  Just curious. The Ofev nurse told me that I would need to eat a HUGE breakfast which I’m not sure I can do.  From reading this forum, it sounds like many of you are fine with a banana, maybe some peanut butter?

Thank you.  Any advice and suggestions will be most appreciated as I start on this journey!!

[mark-koziol]

Hello Libby, I found eating 5-6 small meals a day was sufficient for avoiding gastric problems. In the morning I would eat a banana with my bfast. Most of my meals consisted of a protein, starchy carb, and fruit/veggies. I think peanut butter would would also be good for avoiding gastric problems. I was trying to lose weight when I started Ofev. I do know when I would eat a big meal I had breathing discomfort. In the end your body will tell you what foods will be good to avoid gastro problems. Take care and keep us up to date on how you are doing. Mark

[Libby]

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

[karen-martin]

@marianne

Hi, Marianne. In answer to your remark about finding a way to afford your Ofev, I was advised to Google the drug name and “patient assistance” for programs that may be able to help with expenses. In addition to that, the company that makes your drug might have programs for which you qualify. I take Esbriet and have found help that makes that possible for me. I wish you luck because I think all of us will do just about anything it takes to try to keep the disease at bay for as long as possible. All the best. Karen Martin

[mike-mses]

@johnl

Hi John.  My sleep schedule varies, but I usually have breakfast around 6 or 7 am, sometimes as late as 8 am.  My usual breakfast has become a bowl of Cheerios with a cut-up banana and milk.  Sometime I will have a piece of toast or a small donut afterward.  I take my Ofev about 2/3 through my meals.  Dinner is usually between 10-12 hours later.  No ill affects.  I agree that a couple small snacks during the day keep something in my system until a decent dinner.  Often only two main meals a day with some snacks.  I only take the Imodium if I have a loose movement, which is not frequent if I eat right.

On the cost of the Ofev, Open Doors helped me get this at no cost for about four months while I was waiting on my insurance to authorize it.  Unfortunately, my insurance liked Esperiet better because it was cheaper.  After about four months my side affects were so bad that they did approve the Ofev.  Everything seems to be good now.  I am lucky to  have Tricare for Life as my medication coverage, so I only pay $28 a month for Ofev.

After I get three more tests in May I am hoping to be put on the transplant list in Louisville.  We’ll see.

 

Hang in there and always be positive.  Mike

 

[thom]

TO ALL

For those in need of OFEV.

Try calling direct.

OPENDOORS

1-866-673-6366

1-866-OPENDOOR

Its Boehringer Inglehiem  patient support for information and resources.

 

 

[ildlarry]

It is recommended to take OFEV with high protein food.  For me, it is easy to eat half of a sandwich made from Hilshire Farms Deli Cut Chicken or Turkey lunch meat on white bread.
I took OFEV for 15 months, but unfortunately the diarrhea side affect just kept getting worse and I had to switch to Esbriet.  I think the 150mg OFEV held my condition steady. I think my condition started slipping when I reduced to OFEV 100mg and still slipping on Esbriet.

[Charlene Marshall]

Hi Larry,

Thanks so much for writing to us, though so sorry to hear you don’t believe Esbriet is as effective as the 150mg Ofev. How are you tolerating it in terms of side effects? Thanks for tips on the high protein food with Ofev, I find this really important for my consumption of the drug too!
Take care,
Charlene.

[karen-moeller]

I am new to IPF and to this forum.  Would like any advice on this issue – my pharmacy approved OFEV, however, the first month wiped out my drug benefit for the year.  I worked with Open Doors, but you have to be near poverty level for them to approve you, I was just denied today.  The annual cost of the drug is much more than we make in a year.  I have two alternatives – we get divorced and I apply as a single woman on social security or wait for six months until I go on Medicare.  I will, of course, talk to my doctor about holding off on starting the drug.  But it just seems there needs to be another way.  Again, would appreciate anyone’s thoughts on how to pay for this drug.  Thank you.

 

 

[mark-koziol]

Hello Karen, I am sorry I don’t have any alternatives to offer but I hope our members may be able to provide another avenue for you to pursue. Take care, Mark.