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.
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.
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.
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.
I have lost about 20 pounds and I needed to do that. My appetite is not like in the past but that is good since I am not as active as I was when younger.
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.
I did the stem cell therapy but do not know if that helped or not. It is hard to tell what helps. How much of my condition is age (80) vs ailments?? I've never been 80 before. All I know to do is "throw the kitchen sink" at and hope something works. All is in God's timing.
I have been diagnosed with IPF since 2014. I have always had a chronic cough but lately I cough more sputum and am borderline short of breath. I am on 2L of o2 at bedtime. Not sure if it helps or not. I have been involved in a research program at the University Of Iowa and took perfinidone for 1.6 years that did nothing?? I got started on OFEV and I can't really tell much difference other than it make sense me feel worse. I am also involved in pulmonary rehab program. My cardiologist thought maybe I should be evaluated at Mayo so he made reservations for me on 11-27-2018 at the pulmonary clinic.
I am struggling with the decision to go? I am wondering what Mayo is going to do different than what everything I have been through the past 5 years? We have good doctors here in Iowa and I am constantly being told there is no magic bullet and I understand. Hummmm..... Any one have any words of wisdom?
I have been diagnosed with IPF since 2014. I have always had a chronic cough but lately I cough more sputum and am borderline short of breath. I am on 2L of o2 at bedtime. Not sure if it helps or not. I have been involved in a research program at the University Of Iowa and took perfinidone for 1.6 years that did nothing?? I got started on OFEV and I can't really tell much difference other than it make sense me feel worse. I am also involved in pulmonary rehab program. My cardiologist thought maybe I should be evaluated at Mayo so he made reservations for me on 11-27-2018 at the pulmonary clinic.
I am struggling with the decision to go? I am wondering what Mayo is going to do different than what everything I have been through the past 5 years? We have good doctors here in Iowa and I am constantly being told there is no magic bullet and I understand. Hummmm..... Any one have any words of wisdom?
Hi, @raincrowe - I've merged your post with this discussion so that you could continue your discussion in this thread called "Pulmonary Fibrosis*," and talk further with members like @robinson@wba3721@mycatischi@frane1939@windwalker and others.
I would add that generally Mayo Clinic will not accept patients where it is felt there is nothing further to add to their care. I trust that some of these members will have further insights for you from their experiences.
You mentioned treatment with Nintedanib (Ofev) and that you can't tell much difference. Wanted to confirm you were also saying it made you feel worse?
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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 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.
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.
I have lost about 20 pounds and I needed to do that. My appetite is not like in the past but that is good since I am not as active as I was when younger.
I did the stem cell therapy but do not know if that helped or not. It is hard to tell what helps. How much of my condition is age (80) vs ailments?? I've never been 80 before. All I know to do is "throw the kitchen sink" at and hope something works. All is in God's timing.
I have been diagnosed with IPF since 2014. I have always had a chronic cough but lately I cough more sputum and am borderline short of breath. I am on 2L of o2 at bedtime. Not sure if it helps or not. I have been involved in a research program at the University Of Iowa and took perfinidone for 1.6 years that did nothing?? I got started on OFEV and I can't really tell much difference other than it make sense me feel worse. I am also involved in pulmonary rehab program. My cardiologist thought maybe I should be evaluated at Mayo so he made reservations for me on 11-27-2018 at the pulmonary clinic.
I am struggling with the decision to go? I am wondering what Mayo is going to do different than what everything I have been through the past 5 years? We have good doctors here in Iowa and I am constantly being told there is no magic bullet and I understand. Hummmm..... Any one have any words of wisdom?
Hi, @raincrowe - I've merged your post with this discussion so that you could continue your discussion in this thread called "Pulmonary Fibrosis*," and talk further with members like @robinson @wba3721 @mycatischi @frane1939 @windwalker and others.
I would add that generally Mayo Clinic will not accept patients where it is felt there is nothing further to add to their care. I trust that some of these members will have further insights for you from their experiences.
You mentioned treatment with Nintedanib (Ofev) and that you can't tell much difference. Wanted to confirm you were also saying it made you feel worse?
Do you still have side effects from OFEV after 2 years?