Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Thanks for posting Greg. Keep us up to date on the lung transplant if you can. Does the pirfenidone seem to be helping? Leanne uip 1/03woodman22303 wrote: Hi Wayne,I have been on Pirfenidone since the beginning of August 2006 through Ohio State University Hospital. The first 8 weeks went well. Then I broke out in a rash/hives on my legs, arms, waist. It itched terribly. They took me off the meds for a month to allow the rash to completely clear up. I went back on Pirfenidone the middle of November. Since then, it has been going well. I'm at the rash/hive point again, but so far, so good. No rash/hives. They said usually if one has symptoms, it happens in a week or so. Mine was quite abit longer. Yes, I also had the open lung (VAT) procedure. It wasn't as bad as I expected. I was out of the hospital in three days without any complications.Now I am just waiting for OSU to call that they have a lung for me. I was put on the transplant list December 15, 2006.Hope all goes well for you on the clinical...think positive!Greg S. Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi Leanne, Thanks for the response. I think the pirfenidone is helping, at least my counts on my last pft's and 6 min. walks didn't go down much. I also feel that the physical therapy 3 times a week is a great help. It feels good to be trying to do something to help my physical condition since I have no control over the IPF. My dr. says the best thing I can do is to keep as active as possible. While my body allows this, I'll continue. I'll keep you posted when the call from Columbus finally comes. Greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi, Greg. The Dr. warned me this week about the rash but he emphasized the rash would occur because of sun exposure. He said to use lots of sun block and stay covered. That was great news as we are leaving for Florida for a month at the end of February. That was not the kind of news I wanted to hear from him. He also said the most common side effect was stomach and digestion problems. Have you had those problems? Also how many of the pir. are you taking? He has me started on 1, three times a day but will build up to 3, 3 times a day over the couple of weeks. Wayne > Hi Wayne, > I have been on Pirfenidone since the beginning of August 2006 through > Ohio State University Hospital. The first 8 weeks went well. Then I > broke out in a rash/hives on my legs, arms, waist. It itched > terribly. They took me off the meds for a month to allow the rash to > completely clear up. I went back on Pirfenidone the middle of > November. Since then, it has been going well. I'm at the rash/hive > point again, but so far, so good. No rash/hives. They said usually > if one has symptoms, it happens in a week or so. Mine was quite abit > longer. Yes, I also had the open lung (VAT) procedure. It wasn't as > bad as I expected. I was out of the hospital in three days without > any complications. > > Now I am just waiting for OSU to call that they have a lung for me. I > was put on the transplant list December 15, 2006. > > Hope all goes well for you on the clinical...think positive! > Greg S. > > > > > > > --------------------------------- > Looking for earth-friendly autos? > Browse Top Cars by " Green Rating " at Yahoo! Autos' Green Center. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Isn't it just like a dr. to mess up a great vacation?! My dr. told me the same thing. I was outside the days the rash started, but it was in Oct. and I had on a long sleeved shirt, a hat, light jacket, jeans, shoes, etc. I just didn't see how the sun could have been a factor. The rash was on my legs, waist, inside of my forearms...all places which were well covered when I broke out. Wherever or whenever I got warm, it itched and bumps appeared. I felt like the aliens were going to pop out of my skin! This delayed our SC vacation for a week so the dr. could check me out after I stopped taking the meds. Then we spent a month at HHI during which time I used a 50 spf at all times. The dr. decided to keep me off the pirfenidone until we returned because he was afraid the rash would reappear. It didn't. And hasn't, thank God. Thankfully we all aren't the same, so think positive that you WON'T have the same problem. One good thing about the rash, it should mean it's the real thing, not the placebo! I started by taking 1 pill, 3/day. Then built up to the maximum, 3 pills, 3/day. I haven't noticed any digestion or stomach problems, but I've been on Nexium for about 2 years. I have noticed dry mouth, but it's hard telling which medicine is causing that. Greg Quote Link to comment Share on other sites More sharing options...
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