Rene Hakkenberg

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 and…[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 the…[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. I…[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 Pulmonologist…[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 time…[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 is,…[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 loss,…[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 dust…[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 a…[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 a…[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 on…[Read more]