I took a class on medical marijuana offered by University of Colorado. It does appear to have bronchodilating properties. I do not recall if this was quantified with PFT or if it was strictly anecdotal. The classification of cannabis as a schedule 1 drug has been a detriment to broad and in depth study of its effects. One problem with studying…

Read more

I stopped taking Ofev because I developed significantly high blood pressure while on it. BP returned to baseline after discontinuing it.

Both of my lungs are scarred about equally. My cough is more productive early in the day. By late afternoon I usually have a dry barking cough with little to no mucus. I also experience stabbing pains. Having bronchiectasis (which I do), causes more mucus production. I also have asthmatic symptoms along with the IPF. My airways become… Read more

Hi Amy,

My cough also started out dry….about 20 years ago. I was diagnosed with IPF after VATS and MDD about two years ago. I have traction bronchiectasis too, and my cough has gotten more productive as time passes. I have found that staying very well hydrated keeps sticky plugs from developing. Maybe drinking more water and avoiding things… Read more

I feel for you, and I’m sorry for your loss.

 

Regina

Why not get a second opinion? It may be that you don’t present with all the classic features of IPF. Have you asked your doctor exactly why they want surgical biopsy? I will share my experience as an example:

Honeycombing was not visible on my HRCT and I had an atypical amount of upper lung involvement. I also had a history of environmental… Read more

Are any of you aware that 23 & Me is doing genetic research into IPF? As of 2 months ago they were hoping to recruit another  1000 volunteers. The testing is free if you qualify as a participant.

Hi Pete,

 

The nurse from Genentech told me that it is unnecessary to spread doses out evenly. She told me that I only need to keep them at least 4 hours apart and take with food.

I hope this helps.

 

Regina

This is a really great question. I will be starting back on Esbriet tomorrow after being off treatment for several weeks. We were trying to determine if I was having side effects due to Esbriet or another new medication. When I discontinued Esbriet most of my issues resolved.

I learned from genetic testing that I have a CYP genetic variant… Read more

I have stopped taking Esbriet. I was having some really unusual side effects. I started taking prednisone right around the same time I started Esbriet though, so some of the problems may be the prednisone or the combination of the two. I want to give it another go and see if there’s a repeat of the issues. I never did reach full dose. I got as… Read more

@davidaswain

 

While on Esbriet I experienced tingling and throbbing in my fingers and toes and to a lesser extent, my feet. I’ve been on a temporary break from Esbriet (doctor’s decision) for about a week while we figure out what medication  is causing other issues. Since about 48 hours off Esbriet the sensations I described stopped. They… Read more

Mark,

I’m glad to know that you and your wife are doing well after having COVID.  Since starting on prednisone I have been more anxious about being inadvertently infected with the virus. I acknowledge the need for continued vigilance but it is good to know that a body on immunosuppressants can still mount an effective defense.

 

Thanks for… Read more

I experienced nausea the first few days on Esbriet. I now continue to experience mild stomachache after each dose. I’m still not on the full dosage because of other, atypical side effects. I have also experienced a new level of  fatigue  since starting it that has not abated. I have only been taking it for 7 weeks.

I have IPF. I was fairly stable until 7 weeks ago when there was a fire in my building. I have been on prednisone 3 times since then. Smoke inhalation caused my cough to become very bad. We have tried various doses and titration to wean me off, but so far the coughing comes back as soon as the dose is decreased. I’m hoping this 3rd time is a… Read more

My heart goes out to you. Loosing your mother is never easy. I hope you find comfort and peace knowing that her suffering is over.

@suzrbrennan,

Thanks for sharing your morning routine; I have hip issues and these sound like they might really help!

 

Regina

I’m curious to know how long it took to develop food aversions after beginning Ofev. So far tiredness is the only side effect that is impacting my daily routine. I still want to eat everything I had been before beginning treatment. I really have to restrain myself from over eating while I’m not feeling like moving. I put my stationary bike… Read more

Beginning a low carbohydrate diet like the one you described will usually result in the loss of body fluid. This often results in loss of electrolytes as well. This happened to me when I first adopted a low carb lifestyle. I now supplement with unrefined salt, magnesium, and potassium. I havent had a problem in years since supplementing with… Read more

@pbessio ,

My biopsy was pretty uneventful too. The chest tube grossed out my kids, and I had fun with that 😆. But honestly, didn’t even feel it. Pain afterward was far less than I had been led to expect. I had surgery at noon on Wednesday and was discharged at 10 a.m. on Friday. The worst part of the experience was the hospital bed. I… Read more

@jross ,

In March the FDA approved Ofev to treat patients with chronic, progressive fibrosing interstitial lung diseases. These include Hypersensitivity Pneumonitis, Autoimmune ILDs, and NSIP.

It may be too soon to know whether it will help in these diseases, but I would sure be willing to give it a try. I had a surgical biopsy last… Read more

Hi Virginia,

I’m so sorry for you not having support at work. In addition to having your livelihood threatened, it must feel like you are being devalued. I want you to know how much I appreciate nurses. You are the backbone of patient care and the comforting attention you give is critical to our well being and recovery.

Like Bengt, I also… Read more

I think that a second opinion might give you peace of mind, if nothing else. Knowing that you have explored all options might also give you added sense of control of your disease.

I am often surprised at the diagnoses made without a biopsy. I am assuming that your radiological pattern was so obvious that it shows unmistakable UIP pattern.… Read more

I have the same problem sometimes. I tried to post on the thread about the time lag in getting diagnosed several times with no success. But I posted in a different thread using the same device. I just had to wait for a moderator to approve.

Mark and Charlene,

 

This topic bought to mind something I read a little while back.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-group-progressive-interstitial-lung-diseases

 

I had a telemedicine appointment with my primary care doctor recently. I’m no stranger to video conferencing, but I wasn’t entirely comfortable about using it to replace an office visit. However, it was preferable to making a non essential trip and I just needed med refills.

 

I lost my doctors visual feed a minute into the appointment, so… Read more

Hi Charlene,

 

Thanks for responding to my post. Having PF has been a very isolating experience, even before I knew what was wrong. I feel like people just can’t handle hearing about my issues, so I withdraw. It’s important to have an outlet like this forum in which to express my thoughts.

 

Since November I have scoured the PFF YouTube… Read more

The article referenced in this thread reminds me of another I recently read. But the latter was pertaining to SARS-CoV-2.

It theorized that the novel coronavirus is causing damage to the iron transport system. It speculated that unliganded iron (which is toxic) when dumped from Ferritin is instigating inflammation and cell damage in organs.… Read more

That’s a great idea, Mark! Hopefully I can find some recipes that don’t require a lot of ingredients.

One outstanding benefit for me has been connecting with friends using Zoom. Prior to this pandemic, even my very dear friends did not seem to grasp the pain and loneliness of being isolated. Now I see that many of them are feeling the stress, and their concerns for each other is almost tangible. The love and happiness that I see in their faces… Read more

Resisting the urge to eat out of boredom is a challenge right now. Oddly, anxiety about having enough food to last messes with my head too. And it’s not as though I’m ill prepared….. so that’s weird. Fortunately I don’t keep many snack foods around. If I want to eat, I usually have to cook. The upside is that I am enjoying myself by… Read more

Thanks for sharing , Mark. I’ll definitely have the discussion with the doctor about diet when and if Ofev is prescribed. I was merely curious to know if anyone else has experience with this way of eating while taking the antifibrotic.

 

I’ve been eating a ketogenic diet for a couple of years now and my kidney function is actually better and… Read more

Thanks for your input, Dan.

Did you discover that high protein meals helped with side effects after trial and error? I’m wondering if a ketogenic meal would have the same benefit. Extremely low carb, moderate protein, but high fat. I do not tolerate large meals well so I eat very calorie dense portions a couple of times a day. It also sometimes… Read more

I wonder what criteria will be used to determine which patients of chronic fibrosing ILD qualify for treatment with OFEV. It seems to me that the sooner therapy is started, the better. If declining lung function is the determining factor, it seems a bit arbitrary. Who decides, the clinician, or the insurance companies?

Both my GP and my pulmonologist endorse getting the flu vaccine. I did so this year for the first time in many years. With surgical biopsy and hospitalization in the near future, I want to have every protection possible.

I am reminded of the value of vaccination as I lost a friend to the flu this week who was compromised by a… Read more

Mark, that’s good to know! Thank you.

The same thing just happened to me. The request came from “Johnson” but the name link sent me to an error page. I searched through the member registry and no such person was listed.

Terry Moriarty,

Thank you so much for sharing your experience. I advocate abstinence from all sources of sugar. That includes all but the lowest glycemic fruit. It seems crushingly restrictive at times but the benefits, for me, are obvious. Deviating from it is equally telling.

 

I look at sugar….. I gain weight! Same with grains and rice. Sometimes it’s torture to resist, and sometimes I fail. But I feel so much better when I avoid all sources of sugar and starch. I also try to avoid all processed seed oils as these promote inflammation.

I lost 60 lbs over the course of a year and it helped my breathing tremendously.… Read more

Awkward…yes. But I was heartened to see a young cashier wearing both mask and gloves at a supermarket yesterday although she did not appear to be ill. I usually wear a scarf I can cover my face with, at least since getting diagnosed with PF a few weeks ago. I have gotten some quizzical looks while shopping, and even in doctor’s offices. But… Read more

I just picked up the last necessary ingredient to make liposomal vitamin C. I used to make it on a regular basis, before being diagnosed with PF. Now I have compelling reason to resume this practice. I got my flu and pneumonia shots today also. I want to be as strong as possible before biopsy surgery.

I’m thinking I might add some glutathione… Read more