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Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

Interested in more discussions like this? Go to the Lung Health Support Group.

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DennisAJ | @DennisAJ | Nov 4, 2018
In reply to @lisalucier "Hi, @raincrowe - I've merged your post with this discussion so that you could continue your..." + (show)
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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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OFEV did give me stomach discomfort and I kinda experimented around with not taking it and I just decided to not take it. I read that is one of the side effects. It is interesting that even though Pirfenidone & OFEV are both FDA approved to be effective theoretically to slow the progression of IPF but NOT for everyone. There is not any actual facts proving how effective it is for a given individual.

I still have some left so my might start up again. My appointment with Mayo is 11-27-2018 and I have not heard anything to the contrary.

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robinson | @robinson | Nov 4, 2018
In reply to @sassyboots "Do you still have side effects from OFEV after 2 years?" + (show)
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Do you still have side effects from OFEV after 2 years?

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Initially I didn't have the diaherria issue but for the past 3 or more months I have been dealing with it.

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robinson | @robinson | Nov 4, 2018
In reply to @lisalucier "Hi, @raincrowe - I've merged your post with this discussion so that you could continue your..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

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?

Jump to this post

It is really hard to know if OFEV makes me feel worse because everything is a continum and we can't go back and do it again for comparison. We continue to change physically so I think we have to take our best shot and hope it was a good call. I'm continuing with OFEV for now.

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robinson | @robinson | Nov 4, 2018
In reply to @DennisAJ "I have been diagnosed with IPF since 2014. I have always had a chronic cough but..." + (show)
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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?

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I'm not on O2 and do get short of breath when I do much of anything. How much is normal aging vs. IPF? I do not know, I've never been 80 before. All the best.

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dogwood928 | @dogwood928 | Nov 5, 2018
In reply to @purplerod "I found out that I have PF about 2months ago. Had alot of test and blood..." + (show)
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I found out that I have PF about 2months ago. Had alot of test and blood work . The Dr. I have wants me on oxygen 24hrs a day but I have been fighting that. Now it looks like I will be giving in to the use of oxygen. Don't like the idea of there not being a cure other than lung transplant. I try to stay active by golfing softball and yard work, but sometimes its a alot of work where it didn't used to be that way. I will not sit home and be a veggie. I am 66 yrs old.Don't have a mayo clinic near me.

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I have hypersensitivity pneumonitis with fibrosis. I have been improving thru exercise and medication. Is there anyone who has gotten off oxygen after improving?

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tonyhagan | @tonyhagan | Nov 22, 2018
In reply to @purplerod "I found out that I have PF about 2months ago. Had alot of test and blood..." + (show)
Profile picture for purplerod @purplerod

I found out that I have PF about 2months ago. Had alot of test and blood work . The Dr. I have wants me on oxygen 24hrs a day but I have been fighting that. Now it looks like I will be giving in to the use of oxygen. Don't like the idea of there not being a cure other than lung transplant. I try to stay active by golfing softball and yard work, but sometimes its a alot of work where it didn't used to be that way. I will not sit home and be a veggie. I am 66 yrs old.Don't have a mayo clinic near me.

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Just contacted Mayo Clinic near me. I was informed that their cut off age for a lung transplant is 70 years old. This is a general rule and I was told that doctors would evaluate my health condition overall and could make an exception. I live in Florida and Florida Hospital has no age cut off. If they believe that you can survive the surgery and recovery your chances of a transplant increases. I have been told that there are some fairly strenuous tests you must pass in the gym as a starter.

Good luck to you

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Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 19, 2018
In reply to @mkcole "Need information" + (show)
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Need information

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Hi, @mkcole - welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Pulmonary Fibrosis*." I did this so that you can connect with other members talking about this disease.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @dogwood928 @robinson @DennisAJ @sassyboots and others. I'd also like to introduce you to @windwalker.

Here is some Mayo Clinic information on pulmonary fibrosis https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690.

@mkcole, do you or a loved one have this diagnosis? If so, will you share about any particular concerns you have at this time?

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payntertam | @payntertam | Mar 21, 2019
In reply to @ligreen "Thank you for your reply! My husband was diagnosed with chronic inflammation and fibrosis at Mercy..." + (show)
Profile picture for ligreen @ligreen

Thank you for your reply! My husband was diagnosed with chronic inflammation and fibrosis at Mercy Hospital in Ft. Smith, AR. They sent his biopsy to Mayo for second opinion & it came back exactly the same. I read on Mayo website that the only meds they mentioned have some BAD possible side effects like liver damage. So it’s scary! His condition is he is not oxygen dependent. Just doesn’t have energy to move around much & no appetite!! We’ve addressed the chronic inflammation by giving up the stressful lifestyle/employment, staying out of the carcinogenic environment that he has spent most of his life in, & changing diet to mostly non-inflammatory foods, & taking anti-inflammatory supplements. It’s only been 2 weeks since his Dr received the 2nd opinion diagnosis from Mayo.

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@ligreen ,we found out in February, that my husband has idiopathic pulmonary fibrosis.I feel the same as you it is scary.My husband,is on OFEV and is fixing to start his 3rd round of it and when last week for his liver test and so far so go.The only side affect so far are mild nausea no appetite and some diarrhea.I try to read all i can on this disease so i will know whats normal and what isnt.I Just hope one day they find a cure but for now we will keep fighting this disease one day at a time.

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1 reply
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robinson | @robinson | Mar 22, 2019
In reply to @payntertam "@ligreen ,we found out in February, that my husband has idiopathic pulmonary fibrosis.I feel the same..." + (show)
Profile picture for payntertam @payntertam

@ligreen ,we found out in February, that my husband has idiopathic pulmonary fibrosis.I feel the same as you it is scary.My husband,is on OFEV and is fixing to start his 3rd round of it and when last week for his liver test and so far so go.The only side affect so far are mild nausea no appetite and some diarrhea.I try to read all i can on this disease so i will know whats normal and what isnt.I Just hope one day they find a cure but for now we will keep fighting this disease one day at a time.

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I am in my second year of taking OFEV. I have shortness of breath with minimal exertion but I'm still able to work out in the yard, at a slower pace than a few years ago, I'm at the 80 mark so how much of that is age related? I recently had a colonoscopy, it was 5 years since the last exam. I have some cancer history in my family so wanted to double check as I was having difficulty getting the side affect of diarrhea under control. The colonoscopy revealed colon inflammation and the doctor prescribed Mesalamine for the inflammation and this did the trick. List price is about $1,000 for 90 day supply and with insurance is about $100. A possible substitute is Sulfasalazire @ $48 list. Hope this helps you with your situation, we're all different and we just need to keep pushing on.

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