Recently diagnosed with IPF & Honeycomb Lung

[Deleted User]

Hello John, welcome to forum
Sure you are finding here the right place to help you to weigh out pros and cons.
I was diagnosed Jan 2017 and taking OFEV and can’t comment about ESBRIET.
What I’d like to mention to you, is that Each of Us is a Single, Unique and Different case, as a disease stage, as a body, as a human being. This is applying also on treatments and how we are reacting and supporting it.
Some people are unfortunately not able to support it, some are supporting very well with wery little side-effects.
Difficult to predict.
Stay tuned, think also about benefits of slowing down IPF progression, ad never forget that you are Unique 🙂
Jean-Michel

[John L]

Thank you Jean….I will try to do the next right thing.  Still digesting the diagnosis.

[Steve Dragoo]

@johnl

John, you are in the right place. Please read the forums about laser use and supplements. I do both and have been experiencing significant improvements in energy and endurance. I am 70 and originally diagnosed in October 2016 with ILD while in the Philippines.  Returning stateside April 2018 it was shown to be IPF.

Wellness to you,

Steve

[Rebecca Schrantz-Lilly]

John L, yes, if you go on Esbriet there is a change but to say drastic is drastic!  My husband has been on Esbriet since January of 2015 and it has immensely slowed down the progression of the disease.  He has overcome what side effects he had in the beginning and now more than 4 years later, he is so use to it that he does not even think about it.  He walks out of his pulmonologist’s office and pleased with what this medication has done.  This is new to you but once you process this, you will be ok.

[Susan Howitt]

Hi John

Personally I refused Esbriet as too many lung diseases so don’t think it would be at all beneficial  as I said but Jean-Michel is right each of us are different, I hate the idea of a restricted life with these diseases and the idea of being even more restricted by a medication with all the possible side effects is abhorant to me, but that is me. My diagnosis came last May so going on a year now. I have honeycomb formations in both lungs.  My O2 levels are good and bad, no idea why I can have such differing levels from 79 to 97  wondering whether to ask for portable oxygen so as to be able to get around better as I live in the mini mountains of the Morvan Naturel Parc, (France) good pure air BUT steep inclines.

Hope you can come to a good personal decision for your self and only for yourself, no one should persuade you one way or another.

[Deleted User]

Hi Susan, great to find someone else living in France 🙂
Morvan is quite large … where are you ?

[John L]

I feel the same way you do Susan. i presently have a pretty active lifestyle. I know that will change in time, but the side effects of Esbriet are horrible. For one, you can’t be in the sun more then 10 minutes. I live in Florida! It’s sunny here 9 out of 10 days. I love the beach! Also, I ride a motorcycle & this medication with all the side effects will bring that to an end. I am not on oxygen yet & do get winded pretty easily but feel I have some time before I put a stop to the things I love. Wishing you the best Susan. It sounds beautiful where you live. Enjoy each day to the fullest for tomorrow is not promised to anyone. What is the time difference of us?

[Susan Howitt]

Hi John,

 

Did write a reply but it seems to have disappeared into the ether.

 

Time difference I believe, without actually looking it up is about 9 hours.

 

I have every intention of getting an oxygen concentrator so as to be able to move about freely, if not before I will discuss this with the professor when I see him in August but have a feeling I wont make it that long with out.  Regularly go down to 79 blood oxygen now average being about 83 doing anything active,  which is ten below what is good for one.

[Kristina grilo]

I too live in Florida, Melbourne area….where are you?

[Susan Howitt]

Bon soir Jean-Michel

I am in between Saulieu and Autun in a miniscule little hamlet of 10 houses.  The steep slope of the area are not at all helpful to some one with 4 lung diseases but of course the pure air is a great help, no pollution here.

May I ask where you are? In France I suppose as you say *some one else living in France*

[Deleted User]

Hi Suzanne @reglois
I’m living In Lagny/Marne : 40 kms east of Paris

[Susan Howitt]

Bonjour Jean-Michel

So about three hours away.   I must say your English is excellent, it really is. My French (grammar) is appalling even after 30 years here.

Busy day today I collect a little poodle from the refuge to have on famille d’accueil, (foster) he is losing so much weight in the refuge they fear for his life, being  a poodle doesn’t moult, my remaining two dogs don’t moult either. Forces me to take exercise and just gives me something else to focus on, so hopefully I can house train him and make him look  and feel good for the open day at the refuge, June, where some one might just fall in love with him. Can’t understand why he is still un-adopted, been there since September, only small dog too. Ex puppy farm stud dog.

A bientôt    Sue

[Marianne]

John –

I totally understand you feeling the way you do.  I don’t yet have a definite diagnosis.  I have been doctoring since Sept 2018.  I have been through all the tests except for a VATS surgical lung biopsy – which is scheduled for May 10.  I definitely have a Interstitial Lung Disease (ILD) but they are not sure which one yet.  The doctors are leaning toward either IPF or NSIP.    IPF has two drugs approved by the FDA.  NSIP has no approved drugs.  They treat with steroids.  I too am questioning whether to take the medications.  I am not currently taking drugs for ILD and not on oxygen.  Basically, I have a dry chronic cough which go worse last fall.  You will make the right decision for you.  Marianne

[John L]

My latest inquiry is I notice I’ve been having some burning in my lungs when I breathe for the last couple of weeks now. My next appt. with my Pulmonologist is later this month. Anyone have any info on this or how to relieve the burning sensation? Been doing google search with little remedies. Thanks….

[Susan Howitt]

Hi John L

Used to have the feeling of a knife stuck into my chest but that has now eased to a bit of a burn on deep breathing, sort of comes up from the bottom of the lungs into upper chest as you breathe is the only way I can describe it, tried not using my wedge pillow burning plus reflux came back with a vengeance.  Hope the appointment with your pulmonologist gives you some good news and reassurance.

 

[Kathy Medina]

Hi John

Welcome to the forum.  I am on Esbriet.  The side effects are not good.  The one that I notice the most is I have to take it with food or it will give me the worst heartburn symptoms you can imagine.  It is also very difficult for me to eat 3 meals a day.  I know it says to try to take it at the same time each day but, I feel an accomplishment to get it down 3 times a day!  I too love the sun and there is plenty here.  The first summer I after my diagnosis I was in the sun too long w/o realizing it and I got some rash they could not diagnosis that was both painful, itched and was ugly. Now I use plenty of sunscreen with at least a 50 SFP rating.  So far so good. I recently moved from  Salt Lake City Utah to Mesquite Nevada for the air quality.  The air in Salt Lake is real BAD. I made the move knowing there is lots of heat and sunshine here but also central air.

Kathy

[Charlene Marshall]

Hi John,

Thanks so much for joining the forum, you’re among really great people here who are willing to help you whenever we can. It is a special online community for sure, and although I wish it wasn’t a lung disease/IPF that connects us all; I am grateful to everyone here.

Sorry to hear of your IPF diagnosis, along with the honeycomb formations in your lungs. I remember the time of my diagnosis well, and it is never easy so I hope you’re being gentle with yourself in terms of digesting the information and coping. I am not on Esbriet, and unfortunately don’t have any experience with it but do take Ofev with very little effects, so far. I am keeping my fingers crossed that it remains this way for a long time! Have you read our thread about Esbriet? You can find it here: https://pulmonaryfibrosisnews.com/forums/forums/forum/esbriet-pirfenidone/ 

Feel free to connect with any of us if you have additional questions. I’m really glad others have offered their insights and support to you as well.

Regards,
Charlene.

[John L]

Wishing you the best with the meds Kathy. I am hearing similar stories as yours with the side effects. I’m still on the fence with making my decision. More will be revealed….

[John L]

Thanks Charlene…I have been reading many of the forums. Good luck to you & thank you for all you do here……..

[Connie Lum]

Hi John,

I was diagnosed in October 2018. I chose Esbriet because I was concerned about the GI issues with Ofvef. I am currently at the max dose and have no issues at this time. I did in the beginning when I tried the max dose so backed off for about a month with a smaller dose and then tried again and I have not had any issues. I live in California and recently went on a trip to Hawaii and was fine. There are times when I take it with minimal food but still have not had side effects. Sometimes some heartburn but I took Tums which took care of the problem. Also take omeprazole daily. My brothers also have IPF one had a lung transplant and is doing great. The other did not tolerate either med and currently chose not to take any. I have no symptoms, I was tested because of my brother’s lung transplant. Both brothers are younger than me. I currently walk 5 miles a day. Trying to keep myself as healthy as possible. I think you should at least try to take the meds and if the side effects are too much for you then stop and enjoy your life. Good luck!

[John L]

Thanks Connie for your feedback. I have to say it’s good to hear some positive feedback from someone taking Esbriet. Most that I read is nothing but a horror show. I guess some tolerate it better then others. I will see my Dr. on the 22nd to further discuss my treatment plan. She thinks now is a good time to start & I am trying to come to that place of acceptance. Wish you all the best. Thank you….

[Andrew Hall DC]

Hi John, welcome to the forum.  You are in a good place……   I was diagnosed 4 1/2 years ago, and was advised to take Esbriet. My insurance wouldn’t cover it and at $9000/mo it was out of the question.  I also looked at the side effects, and I’ve always been sensitive to drugs.  The thought of not being in the sun bothered me, esp as a fair skinned guy that is prone to sunburn anyway.  I too have a bike, and could not imagine not riding my Road King.  In fact I’m taking a ride today……   maybe fishing in the boat on Friday.  I started laser therapy right after diagnosis, and honestly, my lifestyle has not changed at all.  I still do all the things I did before diagnosis and my pulmonologist in the beginning said I would be on O2 in 4 years and dead in 5 or 6.  My O2 levels maintain at 97,  a long way from needing O2.  I have found that the earlier you start laser therapy the better.  I would hate for you to look back with the ‘shoulda, woulda, coulda’.  You might want to give this some serious thought.  I would be happy to help guide you through finding a laser therapy provider, etc.

The last time I did a laser therapy conference in Fort Lauderdale, I went a day early and rented a Harley softtail, what a great day riding through the Keys.  One of the best riding days I’ve ever had.

Dr Andy Hall

[John L]

Thanks Andy….I will look into it

[Rob Tyler]

Hello John;  welcome to the site.  I am two weeks shy from being on Esbriet for one Year.  I understand Your concerns regarding side effects, and I had the same views.  I did the 2 week, 3 pills a day, to 2 weeks, 6 pills a day, then the full load of 3 pills, 3 times a day.  It went smooth for a couple of months …. but then I hit a wall.  I had the sun reaction, insomnia, bottled up inside, etc.  My Doctor cut me back to 2 pills, three times a day, and the nurses at Esbriet said “amitriptyline” should help with the insomnia and anxiety (and it did).  I stayed on the 6 pills a day for 2 months, then worked my way back to the 9 pills a day …..  and has been smooth sailing since then.  In regards to the sun, I use #50 sunscreen, and wear  “Hanes Cool DRI” long sleeve tea shirts and a hat when in the sun.  I fish a lot on the Chesapeake Bay, so the sun and I have to get along.  I take my pills with food, at least 4 hours apart.  I am a firm believer, the sooner You start the medicine, the better chance You will have to holding the disease to its original position. I am not on 02.  It has been three years since being diagnosed, and my pulmonary test are staying stable.  As stated many times, everybody handles the disease and the medication in a different manner.  Good luck, stay positive!!!!

[John L]

Thanks Rob for the feedback….I am seeing my Pumonologist this Monday to discuss treatment plan. Initially, they said Esbriet but I am leaning towards Ofev for a few reasons but mainly because of the sub sensitivity issue with Esbriet. I live in Florida & it’s sunny here 9 out of 10 days. I appreciate your advice to start meds as soon as I can. It seems to be the best defense to slowing the progression. Thanks again….

[Charlene Marshall]

Such a wonderful and thorough reply to John @rob-tyler, thank you for taking the time to share your experience with Esbriet. I know John and other forum readers will really appreciate it! Thank you again and enjoy your weekend.

Warm regards,
Charlene.