Hi Christie, my pulmonologist was unsure about the type of Fibrosis I had. He wanted to do a lung biopsy but as I also had GERD as determined by Esophageal manometry and a 24 hour esophageal pH test, he also suggested the Fundoplication and the surgeon decided to do both operations, the biopsy and the Fundoplication, simultaneously which I… Read more

Charlene, I don’t know about inhaled Pirfenidone but wonder if by taking it directly to the lungs and bypassing the stomach, one does not have any of the common side effects, like diarrhea, lack of appetite and nausea? Question remains if inhaled Pirfenidone is effective and if so, to what extent compared to the usual pills. Obviously but… Read more

Sorry Don, buy by ‘I encourage you to do do’ did you mean to try Retuxan or did you mean to study the side effects? I also have IPF and of course looking at anything that might help. Thank you.

Hi Cathy, You appear to be reluctant about a transplant. I don’t know how old you are but if it is 70 or lower  and your condition is declining I would certainly recommend you consider a transplant. First you should talk to your doctor about it and talk to some patients that had a transplant and ask them about their experience. I am 78 and… Read more

I have been using Ofev for 3 years at 200 mg daily since the my stomach could not tolerate the recommended 300 mg. Was it effective in slowing the disease? I really dont know as I don’t know what my status would be if I had not taken it. To answer your question one has to do clinical trials with hundreds or thousands of participants. Just like… Read more

Hi Bob, first of all I am not a doctor. I have been on Ofev off and on for over 3 years I tried many combinations of dosages. At times I had to completely stop taking it to give my stomach a rest. I am now on 2×100 mg daily and it appears that I can tolerate it. I think that there is nothing wrong with taking one 150 and one 100 mg. I just… Read more

Jill, I think that contacting a transplant center can done either way – by you or your pulmonologist – . My pulmonologist contacted one center for me and I contacted 3 more. With all 4 centers I had zoom meetings to determine if I could ba a candidate for a transplantation.

Hi Terry, nice to hear from you and learning about your disease. Such bad luck that your HP went to PF. Despite that I live in a place with very good air and no pollution – the island of Bonaire in the Southern Caribbean – my PFT’s have shown a marked decline, especially my DLCO in the last 6 months. I think that Northern California is the… Read more

Hi Terry, I’ve found your post very interesting because my DLCO  is also low  so it’s encouraging how well you have done for so many years while also on low DLCO and 24/7 O2. I have IPF, diagnosed in 2017, but earlier evidence was missed on  CTscan in 2014. You are right, DLCO is a measure of the functionality of the lungs’ exchange of O2 into… Read more

Hi Charlene, I don’t think I have club fingers, but I do have changing nails which are getting bigger, more rounded and shiny. This symptom is not at all painful.

About Christmas in a tropical island…of course no white Christmas unless you mean our beaches with white sand, haha. We give the presents to our kids on December 5 with the… Read more

Charlene, I definitely have clubbing in hand and toe nails. They are rounding in both directions, parallel and perpendicular to the finger or toe. I think the nails are Aldo more shiny. There is no pain.

Have a wonderful Christmas and a better next year,

rene

<span style=”color: #000000; font-family: Helvetica; font-size: large;”><span style=”caret-color: #000000;”>Hi Ron, Taleena and Patricia, </span></span>
<div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”></div>
<div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”>For… Read more

I have IPF, am on Ofev and take 10 mg prednisone simply to stop weight loss and to hopefully get my appetite back and gain some pounds back. Can anyone tell me how long you have to take prednisone until it starts to improve your appetite? Thank you.

Hi David, this must be becoming very difficult for you with so many opinions. I have IPF, diagnosed in 2017 but was probably there already in 2014. Now on Ofev 200 mg daily.

My experience: Weill Cornell  hospital in NY December 2017  diagnosed reflux and was a potential cause of my IPF. Had Nissen fundoplication and lung biopsy in one… Read more

Hi Davis, this must be becoming very difficult for you with so many opinions. I have IPF, diagnosed in 2017 but was probably there already in 2014. Now on Ofev 200 mg daily.

My experience: Weill Cornell  hospital in NY December 2017  diagnosed reflux and was a potential cause of my IPF. Had Nissen fundoplication and lung biopsy in one… Read more

Hi Mal, well, finally received your post thanks to Charlene who blamed silly forum issues. Or was the problem that your Metropolis, Tomakin on the NSW(?) Australian South Coast has no internet, of course it could also be excessive beer although that is probably not possible.

I live in the island of Bonaire, part of the Netherlands, and located… Read more

Hi All, we have discussed lack of appetite and aversion to food in this forum. Now, what is the solution if one does not want to loose weight. Has anybody found a way to stimulate appetite? I have heard that cannabis may do that but have not tried it yet.

Hi Wendy, thank you for your reply. Your credo that lack of appetite and food aversion is a result of the disease and not the medicines makes a lot of sense, considering your experience. May be others that are not taking Esbriet or Ofev can contribute to this discussion. Many people want to lose weight but in my case I desperately want to… Read more

Question, which may be of interest for others:

If one of the two anti fibrosis medicines does not stabilize the disease does it make sense to try the other despite side effects?

My case: Tried Ofev off and on for 2 years with bad  side effects such as diarrhea and weight loss but my IPF was stable. Then, because of Ofev’s side effects,… Read more

Hi Mal,

I was on Ofev on and off for two years (2018 and 2019). I had major side effect problems, just like you, and lost 14 kg on an already slim frame. During these 2 years I stopped taking Ofev a few times, on doctor’s advice and then would restart with lower dosage to build up slowly to 2x150mg. The bad side effects persisted but my PFT’s… Read more

So, Mal, what’s more intolerable, life without Esbriet or life without beer. The answer is obvious. Cheers.

rene

Hi Heather, no, you are not alone and neither is your husband, even at this relatively young age of getting diagnosed with IPF. I was diagnosed December 2017 and was put on Ofev. For 2 years I struggled. Diarrhea, aversion to food, weight loss. Starting at a low dose and slowly building up to 2x150mg daily, had to stop taking it because of… Read more

Hi Fred, thanks for your quick response. If I understand you correctly you did not use Ofev and Esbriet together. That really was my question. My body tolerates Esbriet but not Ofev. But despite taking Esbriet my IPF has worsened while taking Ofev, albeit with major diarrhea problems, my IPF was stable. That is why my question about taking both together.

Hi Wendy and Charlene, I have IPF and tried Ofev off and on for 2 years but just could not tolerate it (no appetite, diarrhea and weight loss). Since the beginning of this year I am taking Esbriet and tolerate that without a problem, except again no appetite and food aversion.  Wendy mentions that the lack of appetite is caused by the PF.… Read more

Hi Charlene, in my  words above it appears that I blame my weight loss in the EGCG. That is not correct. Although my weight loss could have been caused by the EGCG but also may be due to the lack of appetite resulting from taking Esbriet.

Hi All,

This is my experience: I took 600 mg Teavigo EGCG for 2 months, in the morning 1/2 hour before having breakfast. I did not find any improvement in my SOB but I did have weight loss, which I cannot afford and doctors have warned me not to loose weight. I am on Esbriet which lowers my appetite. Then I spoke to a prominent IPF… Read more

In order to be able to draw the most meaningful conclusions  of taking EGCG, I would suggest to all of us using EGCG and that are reporting results thereof in this forum to add as many details as possible, such as what lung disease you have, since when, taking Esbriet, Ofev or neither, whether or not you experienced weight loss and length of… Read more

Hola Jaime, hi Jerry, thank you for your reply and findings. Jaime, I don’t know if just having green tea is the same as taking the extract. It could be that the extract is a much higher concentration of EGCG  than the tea. Jerry, good to know about the caffeine.

Hi Charlene, thanks for bringing up the IPF prognosis predictions. Obviously a very important issue, especially considering the effect of such a prognosis can have on our mental well being. We all know that a Google search will tell us that the life expectancy is 3 to 5 years after diagnosis. I have no idea how accurate this prognosis… Read more

Hi Charlene, hoping that this may help my fellow IPF patients, here is my Ofev and Esbriet story;

I  was diagnosed with IPF after a lung biopsy in December 2017, although there was CT scan undiagnosed evidence that I had it around 2014. I was put on 2×150 mg Ofev after the biopsy in 2017. This resulted in lack of appetite, diarrhea, weight… Read more

Living in the Caribbean island of Bonaire and diagnosed with IPF late 2017 (although undiagnosed 2014 CT scans indicate scarring in the lungs) I definitely find an important negative  impact on my breathing and shortness of breath when the weather is hot and humid.  Or when we are suffering from ‘Sahara Dust’ (no joke), yes, extremely fine… Read more

In addition, may I suggest that you take all your time to relax and enjoy and don’t worry to respond to our forum messages as long as you are in Hawaii. You deserve it.

Dear Charlene, so great to hear that you made your dream come through. You have been so wonderful for all of us IPF-era and we are so thankful for your always encouraging words and we now wish you total enjoyment of the Hawaii trip. Rene

Thank you so much Taleena for your thorough response to my questions about declining DLCO readings. Living on a small island in the Caribbean, luckily not in the path of hurricane Dorian, I do have very limited access to a good pulmonologist that visits once every 2 or 3 months and phone calls are not accepted.

I definitely have GERD and had… Read more

I would urge CAUTION. Things that sound too good to be true (50% improvement in lung function parameters in one day) usually are NOT true…and how much I hope to be wrong.

Rene

I don’t know if you believe in Dr. Google but he says:  “wash mask in warm, soapy water and then rinse it thoroughly with a solution of 10 parts water and one part vinegar. (Vinegar will kill any bacteria, but will not affect the plastic tubing.) Finally, rinse well with hot water and hang it to dry.”

Hi Charlene, thanks for your informative piece on fatigue and sorry you are experiencing it excessively after your trip. I wonder if the 10 hour drive isn’t the main cause.

In my experience Ofev is the main culprit of fatigue. When I temporarily go off Ofev due to stomach and weight issues I find myself much less fatigued, even when physically… Read more

Hi Charlene, thank you so much for your encouraging words. Your generosity towards others while being struck with this horrible disease yourself is amazing and gratifying. You are just a wonderful human being. Stay tuned, a cure or at least a better progression stopper is on the way.

The only self care tip I can give to IPF patients is to keep… Read more

No worries Ray, I just thought the gender mixup was funny, from there the hahaha. Apologies absolutely not required, but a good laugh yes! And you are right, I never posted a picture and wouldn’t know how to do that.

We all have this lousy disease but we have good days and I hope you have a great weekend. I told you about fishing here, well, my… Read more

Hi Ray,

many thanks for your extensive, detailed response which will certainly be very helpful for me and many of us. Amazing what you have gone through…plus the horrible effects of an operation from a tired doctor that never should have taken place that day.

Not sure what silver oared buckets are….

There seem to be a lot of… Read more

Hi Ray, what a sad story it is, your IV , J tube, the operation misfortunes…I feel really bad for you. And I can just imagine, your being such a good cook, how sad it is that you cannot enjoy your own meals, not even your famous Idaho patatoes. Well the others enjoy your food, so that cooking is your good deed.

Any ideas why your… Read more

Another tip for travel, I bought an inflatable wedge pillow, which has minimum volume in the suitcase when not inflated. Inflating it by mouth is not hard, even for our scarred lungs. It can be used the normal way or be put underneath the mattress, raising the head area by some 6 inches.

 

Hi Ray,

well, despite the 4 “ of snow, I am glad you have not lost your sense of humor. Just be happy that you read my post and you saved all that money. But you’re right, one might think living for 42 years in a small Caribbean island, with good air and lots of sea food and diving but too much sun, one may not get IPF. Wrong! The only cause I… Read more

Hi Josie,

Interesting that you live in Toronto, although I do not envy the cold weather that should be there now. I used to visit friends in Toronto, but unfortunately they are no longer with us.

I am a Dutch citizen, did my university at McGill in Montreal, and after working there for one year I moved to Bonaire, Dutch Caribbean and have… Read more

Hi Josie,

I am definitely no expert but some advice from experience:

Good you bought a wedge pillow, it should help against reflux. Remember to move it down your body so that the narrow edge of the wedge is near your hip, just below your waist. That makes sleeping easier, but may put the additional pillow beyond the high edge.

Also good… Read more