@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.
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.
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.
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 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!!
@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!!
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.
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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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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1 ReactionIf 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.
Yes, I'm struggling with diarrhea, too.
@sassyboots thanks for your reply! This will help us make our decision. Hope it continues to go well for you!
@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!!
I just turned 80 last month. Yes, diaherria is an issue, still working on that.
@robinson That’s good to know. How long have you been on the med?
I've been on OFEV about 2yrs.
@robinson Are you able to maintain your weight? My husband has lost 25 pounds & it’s a struggle because he has no appetite.
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.