Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 I just joined this group and thought I'd add my story. I've had asthma all my life - 47 years. Been in and out of the hospital, tried everything from allergy shots to yoga. The leukotriene inhibitors and atrovent were the only thing besides prednisone that helped at all, and they didn't do much for me. I had gotten to the point where I was on the evil candy all the time and it was unlikely I would get off. They were considering supplemental oxygen at night because my 02 sats were going way down even with a CPAP. The constant prednisone had given me diabetes and arthritis. I have become hypersensitive to albuterol; it gives me heart palpitations and headaches. I found Xolair on the web and asked about it three years ago. My doctor went to bat for it even though he isn't a respiratory specialist (I live in a small town). He managed to get it through my insurance. I am one of the truly lucky ones. I was weaned from the prednisone, plus all my other asthma meds over time. I now use my Xopenex inhaler once in perhaps two weeks, and then for exercise-induced symptoms. A week ago, there was an advisory in the valley where I live saying that we had the highest pollen count in the world! I didn't even have a stuffy nose! I have a higher quality of life now than 20 years ago. I am still diabetic, but as I lose the steroid weight, I gain greater control of that. But now I have a dilemma. I lost my job in April. I have been able to keep up payments on my COBRA benefits so far and should be fine through the end of the year, but I really fear losing my health insurance. There is no way I could pay for this drug without insurance. I have applied at a number of places, and I hope to get a job soon. But losing this drug would be like losing my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Genentech has a program for folks who can't afford Xolair and don't have insurance. I think Pat (screen name momma something) posted information how to get an application or whatever in the last 6 months or so. Go back through the message logs if someone doesn't post that again. -Addy --- In , " lurkitty117 " <scruffy@...> wrote: > > I just joined this group and thought I'd add my story. I've had asthma > all my life - 47 years. Been in and out of the hospital, tried > everything from allergy shots to yoga. The leukotriene inhibitors and > atrovent were the only thing besides prednisone that helped at all, > and they didn't do much for me. I had gotten to the point where I was > on the evil candy all the time and it was unlikely I would get off. > They were considering supplemental oxygen at night because my 02 sats > were going way down even with a CPAP. The constant prednisone had > given me diabetes and arthritis. I have become hypersensitive to > albuterol; it gives me heart palpitations and headaches. > > I found Xolair on the web and asked about it three years ago. My > doctor went to bat for it even though he isn't a respiratory > specialist (I live in a small town). He managed to get it through my > insurance. I am one of the truly lucky ones. I was weaned from the > prednisone, plus all my other asthma meds over time. I now use my > Xopenex inhaler once in perhaps two weeks, and then for > exercise-induced symptoms. A week ago, there was an advisory in the > valley where I live saying that we had the highest pollen count in the > world! I didn't even have a stuffy nose! > > I have a higher quality of life now than 20 years ago. I am still > diabetic, but as I lose the steroid weight, I gain greater control of > that. > > But now I have a dilemma. I lost my job in April. I have been able to > keep up payments on my COBRA benefits so far and should be fine > through the end of the year, but I really fear losing my health > insurance. There is no way I could pay for this drug without > insurance. I have applied at a number of places, and I hope to get a > job soon. But losing this drug would be like losing my life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Quite a dilemma you have. I am glad to hear you are much better after 20 years. This gives a lot of us hope there is a light at the end of the tunnel. I have not done any research into this idea but I wonder of those of us on Xolair could join together as a group and present this to BCBS or some other insurance provider or even purchase insurance on our own. More and more persons seem to be using Xolair every day. Would this make it less expensive for all of us. I am not an expert in insurance by any means but I though I would present this idea and see what others had to say about it. ~STEVE ZIMMERMAN, CPM, CVOM~ ________________________________ From: [mailto: ] On Behalf Of lurkitty117 Sent: Tuesday, July 11, 2006 1:22 AM Subject: [ ] My story I just joined this group and thought I'd add my story. I've had asthma all my life - 47 years. Been in and out of the hospital, tried everything from allergy shots to yoga. The leukotriene inhibitors and atrovent were the only thing besides prednisone that helped at all, and they didn't do much for me. I had gotten to the point where I was on the evil candy all the time and it was unlikely I would get off. They were considering supplemental oxygen at night because my 02 sats were going way down even with a CPAP. The constant prednisone had given me diabetes and arthritis. I have become hypersensitive to albuterol; it gives me heart palpitations and headaches. I found Xolair on the web and asked about it three years ago. My doctor went to bat for it even though he isn't a respiratory specialist (I live in a small town). He managed to get it through my insurance. I am one of the truly lucky ones. I was weaned from the prednisone, plus all my other asthma meds over time. I now use my Xopenex inhaler once in perhaps two weeks, and then for exercise-induced symptoms. A week ago, there was an advisory in the valley where I live saying that we had the highest pollen count in the world! I didn't even have a stuffy nose! I have a higher quality of life now than 20 years ago. I am still diabetic, but as I lose the steroid weight, I gain greater control of that. But now I have a dilemma. I lost my job in April. I have been able to keep up payments on my COBRA benefits so far and should be fine through the end of the year, but I really fear losing my health insurance. There is no way I could pay for this drug without insurance. I have applied at a number of places, and I hope to get a job soon. But losing this drug would be like losing my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 well one of the side effects of AMN107 is constipation. I never had that in my life and did not know how serious it could be. I went to the emergency after about 5 days and they did nothing in fact I think they were afraid to do anything as my counts were low. My doctor was away so I went to another doctor and he again did nothing. after 9 days I had to go in for a transfusion to Medical Day Unit and the nurse took one look at me and called a doctor. I then started to throw up blood etc I ended up in the hospital for 6 days. And now the people that make AMN107 know just how serious it can be. But it was a warning on the write up that they give all who go on an experimental drug. which by the way I send Zavie a copy of all the side effects ..just in case someone wanted to know..Thanks for your kind words I had a lot of requests for that story but due to my unique circumstances of 29 years I was not willing to worry people with all my low counts but I dropped to zero pleatelets and Zav asked his doc about it and She said that yes it is serious but people can functions on low counts... so I though I would write that little history and keep track of my counts to encourage anyone interested.. Skip --- doveh12 <deh12@...> wrote: > Congratulations, Skip. You're now a " blogger. " I > enjoyed your > first entry. May I ask you what was the bad > reaction you had in the > beginning of AMN-107 treatment? > > I like what you said about just being " along for the > ride. " We > never know what plans God has for us, do we? > > Warm regards. > > > > > > > > Hello Group, > > after careful consideration I have put my history > on a > > web page.. I have asked Zaviem to check it out to > see > > if it is suitable. I must remind anyone that > reads it > > that my case is a bit different than most. > > So just keep in mind that low counts are ok.. In > fact > > when I zero platelets Zaviem asked his new doc > about > > that and she confirmed that low counts do not mean > as > > much as we all think. > > > > My web page is at > > http://easyskip.tripod.com > > if you wish just leave a message in the guest book > and > > I will try to answer all question although I am > not > > the brightest leaf on the tree. > > SkipD > > DX'ed when the dead sea was just ill. > > > > > > > > > > > _____________________________________________________________________ > _______________ > > Now that's room service! Choose from over 150,000 > hotels > > in 45,000 destinations on Travel to find > your fit. > > http://farechase./promo-generic-14795097 > > > > > ________________________________________________________________________________\ ____ The fish are biting. Get more visitors on your site using Search Marketing. http://searchmarketing./arp/sponsoredsearch_v2.php Quote Link to comment Share on other sites More sharing options...
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