Rene Hakkenberg

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 was…[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 u…[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 was…[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 o…[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 never…[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 s…[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 the…[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 c…[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 t…[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 o…[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 o…[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 in…[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 gain…[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, my…[Read more]