Newly diagnosed UIP OFEV advice

[Nina Merendino]

I would frankly ignore it! I was found to have pulmonary fibrosis Amin 2018 and still have no symptoms but my lungs are fibroid and have all the stuff. I changed doctors 3 times and my new Md is fabulous. My breathing scores have improved and are normal as of Wednesday! He old me to live my life! Am not on any of those meds. Find another opinion! I am. Nurse and for 4 years my life has been miserable! I feel fine so just go for it and I would not start those meds! There is new stuff coming out everyday. Enjoy your trip!! Nina

[Annette]

Oh wow!  I was thinking that everyone on forum was on some type of medication. I have been to my regular DR, a rheumatologist, a pulmonologist and had a biopsy and they all agreed that I was at the beginning stages. Thank you for your input.

[Theresa Skuczas]

I just found out I have IPF. I had symptoms for years the shortness of breath, which I noticed after I quit smoking20 years ago. Runny nose, mucus in chest and throat; all tests said normal. Then I had 3 stents in my heart, left hospital on oxygen 3 Lt. Still heart and lung doctors fighting over why.then after the Fourth visit to lung Dr. She heard clicking so ordered a high-resolution ct scan showed it on bottom of both lung, I don’t have my scrip yet but ordered OFEV if it helps to slow IPF I will take no matter the side effects.

 

[Charlene Marshall]

Hi Theresa,

Thanks so much for writing, though sorry to hear you’re dealing with a new diagnosis of IPF. Know you aren’t alone; this forum is full of wonderful people who can provide support because they’ve been there. Poke around at the different topics and let us know if you have any questions.
Take care,
Char.

[Doug]

You have a real tough decision.  I was diagnosed with IPF and later after a biopsy in June 2017 the UIP type.  I started on Ofev.  The grastro side effects were too bothersome to continue so I switched to Esbriet.  I have side effects but I have decided they are worth it considering the medication may be helpful.  The problem is you have no way of telling if the medication is helping as you don’t  know  what the progression would be without the medication.  I only used O2 rarely at first when I started in 2018.  I am now on it constantly and am limited to what I can do, but I still walk with some breathing issues using 8 lpm continuous using a 3000 psi tank.  I have no way of knowing what my condition would be if I had not started the medication.

My recommendation is to start the Ofev and see what are the side effects, if any.  You may be lucky and not have any.   If you do then you have the same decision to make that I did; to tolerate, change to Esbriet, or not take meds.

[Annette]

Thank you Doug, for your advice on the Ofev. It will really help me get started…after my trip to Colorado with my grandson.

[Denise Rousso]

What insurance agreed to pay for OFEV?  Mine refused, Aetna will only pay a portion of it under Medicare D plan.  It is so very expensive.  Denise Rousso

[Christie Patient]

Hi Annette, everyone’s journey is different, and there are so many types of ILDs out there, so it might be worth seeking a second opinion. Very important to get in with a pulmonologist that specializes in ILDs. Many ILDs will not benefit from OFEV or Esbriet, which are specifically made for the treatment of IPF. Since you don’t feel symptomatic, you’ll probably be fine to wait until after your trip, but you are the only one who can weigh the risk/reward of starting now vs. later. And take everyone’s advice with a grain of salt. Most of us here are not doctors. 🙂 One of our columnists, Ann Reynoso has a similar diagnosis to you. She isn’t in the forums much but if you’d like, I can connect you with her via email if you want someone to chat with who might understand the nuances of the diagnosis.

[Annette]

Thanks for your advice. I have a pulmonologist and have had a biopsy and diagnosed with IUP. I will certainly consider all of it.

[Patrick Coghlan]

I would suggest you undergo a PFT (pulmonary function test), which will provide a baseline number for your total lung capacity.

Initially, my baseline was 72% (of expected?) and my pulmonologist said I had mild scarring and that he would just continue to monitor.  A couple of years later I had an exacerbation and dropped into the 60-range, so I will now be starting OFEV.

This study pooled results from several trials and seems to indicate that OFEV patients who survive 2+ years appear to maintain a lower mortality rate for several additional years vs the placebo patients.  One possible interpretation is that starting OFEV after there has been significant progression reduces the total benefit you might be able to achieve, since the mortality rates during the first 2 years (OVEV vs placebo) appear to be very similar.

[Annette]

Thank you Patrick. I did go through a pulmonary function test before going in for the biopsy. I honestly don’t know my score but it must have been bad enough to proceed with the surgery. I will find out that score and that will help me keep up with the progression.

[John Klinkosh]

Hi,I’ve been on OFEV since around March 2018, I was diagnosed in November 2017. At first I had no side effects at all for about the first five months then I started to get some diarrhea nothing bad. Then about 2020 I started to have stomach problems, gas was a issue but I would solve the problem by not taking OFEV for 3 to 5 days depending how bad my stomach problem was and that seemed to straighten it out for awhile.lately I was having stomach issues and I called Open Doors to see if I could get my dosage reduced from 150mg to 100mg twice a day they transferred me to a nurse and she said I would have to talk with my doctor, but we talked and she gave me some things I should try. She talked about using I can’t believe it’s butter and trying Almond milk using Boost, not ensure, eating protein bars, Turkey bacon, eggs, bananas, pears, peaches.I’ve started doing her recommendations and so far my stomach is a lot better and my bowel movements are better, they were very loose now they are a lot better.I’ve only been doing this for about five days but I don’t have the upset stomach like I was having, hopefully this will continue. I really do feel much better. I also asked her how much food do I have to eat with taking OFEV as I was always thinking I had to take it with a full mea, one important thing is to take OFEV at 12 hour intervals. So if you take it at 8:00 AM take the next one at 8:00 PM but you can eat your dinner earlier and only have like a piece of toast, or a protein bar or a banana with it. Before I was always thinking I had to take it with a full meal. Good luck with your OFEV.

 

[Annette]

Thank you John for your advice. I hadn’t heard that the side effects don’t always show up right at the beginning,,,it’s nice to know though. I will also take notes of the food to eat that may help if and when they occur. Best of luck to you.

[Rachel Norene]

My husband has been on OFEV for 3 years and we do believe it slowed down the progression of IPF — after struggling with the gastro effects for the first year, he discovered the benefit of taking a probiotic and eating fermented (not pickled) but fermented cabbage, beets, and veggies — the probiotic that works best of all on him is Bio-K plus….he was diagnosed 6 plus years ago based on a continual dry cough and now is age 67.

In his case any fried food or fatty meats or hamburgers would make taking OFEV unbearable, so now he carefully selects what he eats out.

We also discovered that going into elevation always resulted in a set back for him, once he got his portable oxygen, he was able to go more easily above 2200 ft……so my advice would be to make sure you obtain a Portable O2 machine like Inogen which can be rented with a prescription….before going to Colorado — wishing you a great trip and positive experience with OFEV

[Patrick Coghlan]

@rachel-norene I guess that includes hamburgers cooked on the BBQ?

[Annette]

Thank you Rachel for sharing your husband’s experiences. I never even thought that going to Colorado would effect my breathing worse than it does everyone elses. I do not have the need right now for extra oxygen but I will keep that in mind. Plus I will keep a list of the probiotics and food advice you shared.

[Adelaide Campbell]

I’d stall on the meds.  That’s what I’m doing.  I should have started on steroids but I’ve a trip booked to UK tomorrow, for two weeks, and I definitely don’t want any potential side effects to spoil my time there.
I will start when I get back.

I might not take that chance if my disease ( ILD PF) was more advanced.  But I’m on oxygen 2l upon exertion.  Pulse, not continuous.
it could be my last trip, but I’m going, no meds.

[Annette]

Enjoy your trip Adelaide because I certainly intend to too. I don’t need oxygen yet but it sounds like a lot of people in the forum already do.

[Christine McCann]

Of the 2 choices OFEV and Esbriet I choose Esbriet because of the heart complication associated with OFEV, Heart disease runs in my family so I didn’t think OFEV was a good choice for me. Esbriet has complications with sun exposure which is bad enough since I am a sun worshiper, I can deal with sun screen and a hat. Both have stomach upset problems associated but I have found that as long as I take my pills (3 3x a day) along with food in my mouth I don’t have a problem, before I figured that out I was nauseous quit a bit. I have been taking Esbriet for 5 years and although I can tell I am slightly worse I fully believe I am only still alive because of the slow down in progression it provides, since there is no cure and the disease is progressive I think I am doing good. I was diagnosed with Emphysema, COPD, IPF and some Asthma, (the Asthma which I never thought I had) has shown up as high in my blood work this last blood test. I hope you are seeing a pulmonologist not just a primary care physician. Because on Esbriet I have to stay out of the sun I must supplement with D3 Vitamins. Also other Vitamins make a difference in how I feel also ie; Magnesium. CoQ10, vit C, B12, I hardly ever have the digestive problems now that I had at first, but when I did, I found Sauerkraut to be a very good neutralizer. You could probably hold off on the meds if you aren’t going to be gone very long , but the sooner the better if you want to prolong your life.

[Annette]

Thank you Christine for your advice. You are the first person that I have talked to about the other medication. My pulmonologist said that one causes more nausea and vomiting and the Ofev caused diarrhea, so I chose it. I guess I will see soon. 

[Thomas Johnson]

Hang in there, Annette…you just might have MANY good years ahead. If the OFEV bothers you (like it did me), try switching to Esbriet. I’ve had zero side effects after three months and my condition has improved.

Enjoy your ski trip!

Tom

[Annette]

Thank you Tom! I will keep that in mind. Take care!

[Marianne]

Hi Annette –

I was diagnosed with IPF in May 2019 after a lung biopsy.  It was a few months until I started on OFEV.  I have had a few stomach issues but nothing major.  I found with OFEV you need to definitely make sure you space the morning and evening doses 12 hours apart.  I am now on 2 lt of oxygen on exertion.  My lungs have been relatively stable for 2 years.  I have portable oxygen and take it when I travel, go to the gym and shopping.  I do not yet required oxygen at night or 24/7.  Everyone has to make their own decision regarding medicine for any lung disease.  I feel that OFEV has kept my lungs stable over the past 2 years.   I was more concerned with going on oxygen than taking the medicine.  I have been on steroids a few times when I had a flare-up.  I am not a fan of steroids.  Hope this helps.  Enjoy your trip.

Marianne

[Kris manian]

Lot of good information. It is my fourth day on Ofev. My mouth is getting dry. Is that due to Ofev?
has any one experienced this dry mouth with Ofev?

are there any meds for dry mouth? I have been waiting to hear from my doctors

thanks

kris

 

[Paul Caden]

Hello Annette, I read most of the replies and I would just like to add that I have had IPF for two and a half years and have been taking Esbriet 3x/day for most of the time. I push myself to do cardiovascular sports as much as I can such as cross-country skiing cycling skating hiking etc All in an effort to keep my lungs working.So far I am not on oxygen but I do notice diminished endurance because of my lungs, but hopefully I can continue a couple of more years before getting on oxygen.Most of the time I try to forget I even have this horrendous sickness. Try and stay happy and healthy live your life and routinely follow your treatments without dwelling on your plight and park it in your mind until u need it 🙂

[Annette]

Thank you Paul! I intend to do exactly that! I have just recently retired from teaching elementary school and then this diagnosis reared it’s ugly head. Blew me away. I love to walk/hike, ride my ebike, kayak and am adding snow skiing next week. I will begin taking the OFEV when I get back on April 10th! Thank you for the advice!

[Karl]

Hi Annette, If you are an active person and your breathing and dry cough is not preventing you from an active life like skiing, I would not jump too quickly into medicines for the relief of symptoms. I can attest to the fact that the side effects of OFEV can be severe and debilitating.
I was diagnosed with IPF in 2018 after a long severe cough that started earlier that year. I had an MRI which revealed plenty of scarring in the lower lobes of both lungs. Interestingly I had another MRI 10 years earlier for a  Kidney stone that revealed minor scarring in the same places.
When I first learned about IPF in 2018 my web search said I probably had 3 years to live. Panic ensued. But strangely I felt good and my activity level was returning quickly except the OFEV caused severe diarrhea. I quit OFEV, resumed my normal activity and have not had breathing problems since.
I know I have IPF. But I am very fortunate that it has not progressed. I will not put my head in the sand, but I will not let it run my life either. I feel desperately bad for the many people on this forum that do not have my good fortune.
So I suggest if you are not experiencing severe or progressing breathing issues that you not treat it lightly, continue to have breathing testing, and continue with your activity to the extent you can do comfortably. I would defer OFEV unless your situation worsens. You may well be among us lucky ones who have had the disease for 14 years or more. Attitude is an important factor. Stay positive.

[Annette]

Thank you Kari for sharing your story…it sounds very similar to mine. I too had a bad cough but I felt well enough to still go to school. I attributed it to allergies/bronchitis…I am going to try the OFEV and see how it goes. I will continue to do the things that make me happy, walk, hike, kayak, ride my ebike until I can no longer do it. Thanks again and I wish you continued health and happiness.

[Kathy Svoboda]

Hello. My husband, 61, was diagnosed with IPF one year ago after a lung biopsy. He started OFEV 5 months ago. He was nervous about side effects but have had none at all. As I told him, there is no certainty that everyone will suffer side effects. Some people do and others do not. You won’t know until you try it.

[Betty Buenning]

Everyone’s bodies are different. My husband was diagnosed in Fall of 2016. The fact that the meds could stave off decline made it important enough for him to start the meds. He was never sick in a 41 year career as a high school teacher. Those meds had the direct effect of keeping him steady for 5 years. All he had was a chronic cough. We got a lung biopsy and a CT scan before we moved across country in 2017. We moved to live close to our daughter and her family. His PFTs really sis not change significantly until 202 and then we were into the Pandemic. We choose Esbriet and were fortunate that our insurance paid for it for the first three years. In 2020 he began to have more difficulty breathing and began to use oxygen. He needed to use it more but participated in Pulmonary Rehab and maintenance. When his need for oxygen increased, we knew it was time to check out the transplant route, but it was difficult to get an appointment due to the pandemic. So, my advice is do not wait. One your lungs begin to have increased difficulty, it is too late to start the meds.

Best!

Betty

[Mary Jane Wallace]

Go skiing, enjoy yourself. When you get back you can start your medication. I have stopped my medication before I went to Maui for a week and started back when I arrived home.