Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Hi, I've also started taking Advair - about two weeks ago - and I'm cautiously optimistic. My coughing does seem to be less..... Thanks Beth! Leanne maryjothibodeau wrote: I have been on advair since diagnosis in May, don't know if it helps, i did quit it for a couple weeks and coughing did seem to increase, just had my first prednisone iv on tueday and was up for 27 hours after it, but finally crashed, my coughing stopped for a few hours almost immediately, I am only suppose to get it once a month iv, and I am taking the vitamins and minerals that it depletes your body of to try to stop the side effects. Time will tell, but I am hopeful it works, I don't have a reflux problem so I don't take those meds, but i am taking digestive enzymes with my meals. I had a lung biopsy with no side effects from it but that's not true for everyone, for me the scar is itchy once in awhile and that's it.My meds are all covered by my and my husband work plans except for about $30 a month and we applying for that to be covered also.wishing you wellmary jo, uip, may 07, saskatchewan>> Good morning all! Had a conferance with my PF doctor yesterday. > Needless to say came away more confused than ever. He wants me to begin > these meds Presidone(SP), Imuran, Revatid, Prevacid, Advair. One of > these meds costs w/o insurance around $1100 per month. The others are > just pricy as well. I'm VA eligible so costs would be less there. He > also wants a lung biospy. All these meds have adverse side effects. The > Presidone(SP) raised my BP higher than is good, it also made me not > sleep and I felt like I was climbing the walls. This med I won't take > again just for those reasons. Even the biospy has problems of surgery. > Has anyone in the group experienced any of these meds and their side > effects? What about the lung surgery? I'm feeling that this all is out > of my control right now. Also if I might ask- my Pulmonary artiry(SP) > pressure is high according to the doc, thats why he want to begin the > Imuran. I sure could use advise of those that experienced any of this. > thanks!! stay well & stay safe. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 I take Serevent (half of the Advair cocktail) but many HPS'ers with PF take Advair and think it works well for them. It does, however, sometimes cause thrush and a few people complain it makes them a bit hoarse.... P.S. Leanne, haven't forgotten to call you. I've been trying to get a hold of our Chicago person so that I'd know more when I talked to you. Hermansky-Pudlak Syndrome albinism/PF 06 www.heatherkirkwood.blogspot.com > >> > Good morning all! Had a conferance with my PF doctor yesterday. > > Needless to say came away more confused than ever. He wants me to > begin > > these meds Presidone(SP), Imuran, Revatid, Prevacid, Advair. One of > > these meds costs w/o insurance around $1100 per month. The others > are > > just pricy as well. I'm VA eligible so costs would be less there. > He > > also wants a lung biospy. All these meds have adverse side effects. > The > > Presidone(SP) raised my BP higher than is good, it also made me not > > sleep and I felt like I was climbing the walls. This med I won't > take > > again just for those reasons. Even the biospy has problems of > surgery. > > Has anyone in the group experienced any of these meds and their > side > > effects? What about the lung surgery? I'm feeling that this all is > out > > of my control right now. Also if I might ask- my Pulmonary artiry> (SP) > > pressure is high according to the doc, thats why he want to begin > the > > Imuran. I sure could use advise of those that experienced any of > this. > > thanks!! stay well & stay safe. > >> > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 I take Serevent (half of the Advair cocktail) but many HPS'ers with PF take Advair and think it works well for them. It does, however, sometimes cause thrush and a few people complain it makes them a bit hoarse.... P.S. Leanne, haven't forgotten to call you. I've been trying to get a hold of our Chicago person so that I'd know more when I talked to you. Hermansky-Pudlak Syndrome albinism/PF 06 www.heatherkirkwood.blogspot.com > >> > Good morning all! Had a conferance with my PF doctor yesterday. > > Needless to say came away more confused than ever. He wants me to > begin > > these meds Presidone(SP), Imuran, Revatid, Prevacid, Advair. One of > > these meds costs w/o insurance around $1100 per month. The others > are > > just pricy as well. I'm VA eligible so costs would be less there. > He > > also wants a lung biospy. All these meds have adverse side effects. > The > > Presidone(SP) raised my BP higher than is good, it also made me not > > sleep and I felt like I was climbing the walls. This med I won't > take > > again just for those reasons. Even the biospy has problems of > surgery. > > Has anyone in the group experienced any of these meds and their > side > > effects? What about the lung surgery? I'm feeling that this all is > out > > of my control right now. Also if I might ask- my Pulmonary artiry> (SP) > > pressure is high according to the doc, thats why he want to begin > the > > Imuran. I sure could use advise of those that experienced any of > this. > > thanks!! stay well & stay safe. > >> > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
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