Hi all. I have been taking Ofev since June 2022. While I’ve often suffered from fatigue during my journey with RA, Fibromyalgia and now IPF, I hadn’t experienced fatigue like I did this last weekend and now. I’m wondering if I’m entering a permanent phase of fatigue that I often read about from brothers & sisters that suffer from this god…

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I have both a hiatal hernia and IPF. I had the hiatal hernia first, for around 25 years before I was diagnosed with the IPF. Since I’ve been diagnosed with IPF, I haven’t felt any worsening with my HH. My symptoms have continued to be similar. My gastroenterologist however, has put me on pantoprazole 40mg and that is working very well for…

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I don’t like raisins so I don’t think this would be good for me. But I have found a cup of white rice or a cup of applesauce or even a banana before taking my Ofev 150mg does the trick. For some reason, I began suffering with GI side effects continuously during the last 5 months (I’ve been on Ofev since 2021). My PCP offered the above…

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Hi Carolyn, I’ve been diagnosed with IPF since March 2020 and I’ve been taking Ofev for almost 2 years. I’ve done the COVID, FLU and RSV vaccine with no problems. You should be okay.

Hi Gavin,

I’m so sorry you’re having such a hard time both with your illness and your medical team.  Not being familiar with the medical program you have it’s hard to make suggestions.  But the first thing I would do is change doctors!  Or maybe you can attend pulmonary rehab.  This would help you learn how to calm yourself through breathing… Read more

Unfortunately Dee, as the others have stated, it’s really hard to find a doctor that’s going to first, validate the diagnosis, second, treat you with dignity and respect and third, really care about you!  I got to pulmonologist number three and he turned out to be the guy I want on my team.  I was lucky.  You can’t give up, especially with… Read more

Hi Chris, the way my pulmonologist explained it to me simply is as follows:  if you have pulmonary fibrosis that is being caused either by Gerd or an autoimmune disease, like rheumatoid arthritis, they focus the treatment on the autoimmune disease or Gerd.  Doing that will stop or slow the cause thereby slowing down the scarring. However, if you… Read more

Unless it’s absolutely necessary  I would not do it.  I had one last year to determine the type of fibrosis I had.  Although I did not experience exacerbation, it was extremely painful and invasive.  We did confirm that I had IPF and not NSIP which was the original diagnosis I had gotten from a previous pulmonologist. This  was terribly… Read more

Kim, I’m so sorry for your loss.

I have had GERD and a hiatal hernia for the last 30 years.  I’ve also suffered with Rhuematoid arthritis for the last 10 years.  The first couple of pulmonologists that saw me told me that my pulmonary fibrosis was caused by my RA and my Gerd.  I was diagnosed with PF in March 2021 so I’ve only known of my PF… Read more

Hi Chris, I don’t know enough to tell you that when your chest feels “funny” it’s because the IPF is active or not.  But I do on occasion have an uncomfortable feeling in my chest area as well.  Mine feels like someone is sitting on my chest and even though my O2 sat is good, I feel like I’m working a little harder to breath. I’ve spoken to… Read more

Hi John, I have IPF and began taking Ofev for the last 6 months.  I take 2000 mg of cellcept daily and I also do the Rituxan infusions every 4 months for the last 4-5 years.  I have done well with this compliment of medications.  I also get a little fatigued for around 24 hours after the infusion.  Good luck with your journey!

I’d love to be on the next call.

God Bless you and I hope it continues for a very long time.  My advice to you would be to stay active and do everything you want to do in your life NOW!!!  As my fellow warriors have expressed, this is a very volatile disease.  You never know when it’s going to rear it’s ugly head.  So enjoy no symptoms.  My motto is be happy, be healthy and be… Read more

RIP WARRIOR🙏🙏💕💕🫁🫁🫁

Hi Wesley,

I was diagnosed with IPF RA about 18 months ago.  I immediately changed what I ate to decrease the amount of inflammation in my body.  So, I took out sugar, gluten, flour, alcohol, soda, caffeine (except for one cup of coffee in the am😊) and processed foods.  I drink loads of water, pedialyte for hydration and electrolytes and… Read more

We bought a tempurpedic mattress and it’s the best thing.  Sleeping with my head elevated is the best for me!

My happy place is sitting on the beach.  Although now I have to find happiness in sitting by the beach, under shade, if it’s during the summer.  I love going in the winter because I can get closer to the water!  While I have to modify my beach visits because of my IPF, I am grateful for being able to still go.  I love listening to the waves as… Read more

UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

I suffer from chronic pain.  I have fibromyalgia, rheumatoid arthritis, osteoarthritis and IPF.  I have a pain management doctor and he manages my pain with pain meds, topical pain lotions and lidocaine patches.  He is the best doctor I have had.  Find yourself a pain management doctor that will work with you to understand your pain. I hope… Read more

That’s what I’m hoping for!  And yes, my diagnosis is pf.

That’s part of my problem.  My pulmonologist doesn’t really care about helping me in the process of getting the medication.  As a result, I’m seeking a third pulmonologist opinion!

I was diagnosed with NSIP and Bronchiectasis a year ago. I was told then that I was in the moderate stage of my illness.  I use oxygen on exertion, 3-4L.  A good day for me is when I have the energy to do things at home or run errands.  A good day is when I run errands and I don’t think about the weight of my portable oxygen on my shoulder.  A… Read more

Hi everyone, I thought I was the only one having trouble doing household chores!  I too have problems bending over to pick things up or to get things from a low drawer.  I use O2 when walking.  It helps very much.  I have someone who comes in to clean twice a month.  We are very blessed to be able to do this otherwise my house would be… Read more

Julie, my condolences on the loss of your father.  He’s in a better place now.

Yes Mack.  Mine has and I’m having to now take blood pressure medicine!  Historically, I’ve always had low blood pressure.  Last year, I was diagnosed with NSIP and Bronchiectasis.  At the same time, I was diagnosed with HBP. I was 63 years old.  The hits just keep on coming!

Thank you Wanda and Marianne for your information.  I’m currently speaking with Genentech about the programs available.

 

Hi Brenda, I live in the states and I’m having a hard time getting the prescription filled.  My doctor has now changed my medication to Ofev.  I guess he thinks they might fill one over the other.  Even though Ofev is supposed to be cheaper it’s still expensive so we’ll see how I make out.

Thank you for your feedback!  I will research with Genentech.

My pulmonologist prescribed esbriet in October, 2021.  I have not been able to get an approval for this drug to be filled.  Has anyone experienced this.  Can you give me some pointers on how I can get this prescription approved?

I started rehab shortly after I was diagnosed.  I didn’t know what to expect.  At my rehab, we do breathing exercises, aerobic exercises and weight strengthening exercises.  At first, I couldn’t do very much but after a couple of months I have increased in repitition and resistance on the different exercises!  My breathing and endurance have… Read more

I have RA-ILD.  I use albuterol and it helps open up my bronchial.

Hi Christie,  two weeks after my diagnosis of PF, I took ALL of our important documents, organized them and put them in an organ folder under respective tabs so that when my time comes it will be easy for my family to find the necessary documents.  My husband and my son both know where they are.  We’ve had wills and medical directives for… Read more

I’m not on anti fibrotics but my doctor does not want me to drink.  He says there’s to much sugar in alcohol and i need to stay away from alcohol to keep my inflammation low.  He’s also taken me off of Tylenol which was my go to for arthritic pain.  He says Aleve is easier on the kidneys.

Thanks for your feedback James.  I’m sorry you and your wife caught COVID but I’m glad to hear that you made it through without any major issues!  It gives me hope should I catch COVID.  I always worry about the respiratory issue being the most complicated but in your case that wasn’t so.  Keep up your speedy recovery.  Thanks!

Hi everyone, my rheumatologist has me on 1000mcg of cellcept and a Rituxan infusion every 4 months.  When I have a flare up she prescribes a z pack of prednisone tapering off in 5 days.  When I do these I have issues sleeping, and shakiness.  After a couple of weeks of being off of the prednisone I go back to what’s normal for me.  I have PF… Read more

Hi Amber,

If I were you I would get a second opinion.  I take cellcept all the time and every now and then take prednisone for flare ups.  Both my rheumatologist and pulmonologist agreed that I should do my COVID vaccines as well as my flu, pneumonia and shingles vaccines.  Up to date I’ve had three COVID vaccines, a flu vaccine and a… Read more

Hi Charlene, at my previous place of work they designated a room in the building for smokers.  This was great except that there was so much smoke in the room when they opened the door the smoke billowed out of the room into the area.  While you didn’t have to deal with smoke as much you still had to deal with the smell.  Good luck with this… Read more

Hi Debra, glad to hear that you are getting better and didn’t require hospitalization or oxygen!  I just got my booster.  I hope it lasts longer than the second dosage.

Hi all, I have finally received my “booster” vaccine and so far so good.  The fact that I have PF made me eligible.  There is so much information out there that I feel like it’s sometimes a shot in the dark as to what we should do to treat our illness!  I hope that we can get better information as time goes on!

Hi everyone, I wear a medical bracelet which I purchased at Laurens Hope.  It’s great because it looks like jewelry so people don’t ask me about it.  They compliment the bracelet as if it were jewelry.

Hi Bob, sorry to hear that you have contracted COVID!  What kind of infusion are you getting?  Hope you get well soon!

Sorry to hear about your friends mom!  That is so sad!  However, the information for the dad helps.  You hear people say that if you’re vaccinated you won’t die – you’ll just get sick.  I’m glad to hear that her dad has made it through even though he has COPD.  It gives me hope. I’ve been vaccinated but I’m doing Rituxan infusions for my RA so… Read more

Thanks Marisa!  Sorry to hear about your husband!  What is a monoclonal infusion and what does that do for you?

 

Hi, I’m curious to know if there’s anyone out there with PF that has been vaccinated and has contracted COVID 19.  How did you feel?  Was it terrible?  Did being vaccinated make a difference on the outcome?