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tetreaulta5
@tetreaulta5

Posts: 1
Joined: Feb 25, 2012

Pulmonary Fibrosis*

Posted by @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

REPLY

@ligreen

@windwalker Thank you! I am a constant googler myself & have learned so much about pf since my husbands diagnosis. I knew nothing about it before. I would really like to hear from some who have been treated for pf by Mayo. The side effects of the new meds scare us.

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Ligreen, I was diagnosed with PF in July. I'm taking OFEV with good results but yes, side effects happen. Not every day, but I often get sudden diahrea.

If you are referring to IPF, yes that is the diagnosis I have had. I'm taking OFEV. I also have had stem cell therapy. So far the IPF seems under control and my situation is stable, for which I'm thankful. The best to you.

@robinson

If you are referring to IPF, yes that is the diagnosis I have had. I'm taking OFEV. I also have had stem cell therapy. So far the IPF seems under control and my situation is stable, for which I'm thankful. The best to you.

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Yes, I'm struggling with diarrhea, too.

@sassyboots

Ligreen, I was diagnosed with PF in July. I'm taking OFEV with good results but yes, side effects happen. Not every day, but I often get sudden diahrea.

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@sassyboots thanks for your reply! This will help us make our decision. Hope it continues to go well for you!

@robinson

If you are referring to IPF, yes that is the diagnosis I have had. I'm taking OFEV. I also have had stem cell therapy. So far the IPF seems under control and my situation is stable, for which I'm thankful. The best to you.

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@robinson when referred to as IPF doesn’t that mean you don’t know what caused the fibrosis? We do know what caused my husband’s. It was working in carcinogenic environment most of his life. He’s 76 yrs old. I would guess the symptoms & treatment would be the same either way. Are you experiencing no side effects from the olev? I’m not familiar with stem cell therapy. I’ll research it. Thanks for your info!! I wish you the best!!

@ligreen

@robinson when referred to as IPF doesn’t that mean you don’t know what caused the fibrosis? We do know what caused my husband’s. It was working in carcinogenic environment most of his life. He’s 76 yrs old. I would guess the symptoms & treatment would be the same either way. Are you experiencing no side effects from the olev? I’m not familiar with stem cell therapy. I’ll research it. Thanks for your info!! I wish you the best!!

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I just turned 80 last month. Yes, diaherria is an issue, still working on that.

@robinson

I just turned 80 last month. Yes, diaherria is an issue, still working on that.

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@robinson That’s good to know. How long have you been on the med?

@ligreen

@robinson That’s good to know. How long have you been on the med?

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I've been on OFEV about 2yrs.

@robinson

I've been on OFEV about 2yrs.

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@robinson Are you able to maintain your weight? My husband has lost 25 pounds & it’s a struggle because he has no appetite.

@robinson

If you are referring to IPF, yes that is the diagnosis I have had. I'm taking OFEV. I also have had stem cell therapy. So far the IPF seems under control and my situation is stable, for which I'm thankful. The best to you.

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I also have IPF and am interested in stem cell therapy. Where did you get it done and was it sucessful?

I have been taking Esbriet for the last six months and hsve had minimsl side effects. Had a breathing test yesterdsy and my Pulmonologist told me my breathing has improved since the last test. He stressed that even if there was no improvement, the fact that it has not got worse is what is important. IPF can progressively get worse. Stabilization is good – progression.

Please let me know about the stem cell treatment received.

@wba3721

I also have IPF and am interested in stem cell therapy. Where did you get it done and was it sucessful?

I have been taking Esbriet for the last six months and hsve had minimsl side effects. Had a breathing test yesterdsy and my Pulmonologist told me my breathing has improved since the last test. He stressed that even if there was no improvement, the fact that it has not got worse is what is important. IPF can progressively get worse. Stabilization is good – progression.

Please let me know about the stem cell treatment received.

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have taken esbriet for theee years and am doing well.it will not cure it, only slow down the progression. that is better than nothing

@rayhastings

have taken esbriet for theee years and am doing well.it will not cure it, only slow down the progression. that is better than nothing

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@rayhastings Have you experienced any side effects from the esbriet? Is this the only med you are or have taken for this condition? Thank you.

I have ipf

one thing i have found out, dont take it on an empty stomach. it makes me sick if i do.ne cautious about claims about miracle claims to cure IPF.there is a lot of research going on and it appears hopeful for progress.

@rayhastings

one thing i have found out, dont take it on an empty stomach. it makes me sick if i do.ne cautious about claims about miracle claims to cure IPF.there is a lot of research going on and it appears hopeful for progress.

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I agree about not taking Esbriet on an empty stomach. I also think it makes me feel fatigued. Not sure it could be the Esbriet or just the fact that I have IPF.

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