Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 My 30 year old son has suffered with severe persistant asthma since birth. None of the drugs available were able to control his asthma. He started on Xolair - December of 2004. It took over a year for us to notice he was getting better. Since then he has continued to improve - also helping his hay fever. We have been paying $40.00 co-pay a month for his Xolair. Last month we were informed his co-pay for Xolair has increased to 50% - which leaves us a balance of $1056.00 per month. We are not able to pay this amount. He has not had his Xolair for 5 weeks and his asthma has worsened. We know Xolair was helping. Sincerely, Hartnett ----- Original Message ----- From: pyle456 Sent: Wednesday, May 16, 2007 6:13 AM Subject: [ ] Re: Xolair Stats - Wonder if I'm having side effects I take exception to the phrase " blindly accepting a drug not working for months. " All of us have made the decision to take Xolair after conversations with our doctors, families and doing our own research and, most importantly, our own risk-benefit analysis. Further, there are any number of drugs on the market that take weeks to months for users to see full effect (SSRIs for one example). And there are many drugs that have many more side effects that require patients to play musical chairs with before they find the right one (blood pressure medicine, for example). I know that Doug, , and I (and many others on this board) have been so sick and suffered so terribly in our quality of life that we thought it well worth the wait to stay on a medicine that had a response time as variable as Xolair's. For us it has paid off in any number of ways. I'm not the only one who is grateful for the success I've had on Xolair - my husband, my parents, my friends are all grateful to have " the old Addy " back. How many people were in the sampling of the studies you read? What I read in the study you have reported here, most patients responded within three months but there are some that didn't. Did it say what percentage of those responded later? Or did they just give up. Xolair reports an average response time of four months, but it does take some people longer. Doug is a perfect example of this - it took him a year and it has changed his life, dramatically decreasing the toll that the years he's spent on prednisone has taken on his life. You say that they can test for IgE while on Xolair. Does your doctor have the ability to do this? Because the old IgE tests cannot tell the difference. Does he have the newer test than can tell this? My doctor is still unable to do this. Yes, he can test for IgE while I " m on Xolair but the test he has doesn't distinguish Xolair-bound from free floating IgE. If your doc doesn't have it either, the manufacturer is probably still waiting on a patent before making it available for sale widely (and then it may be too expensive in the first few years for most practices to buy it, who knows?) If you don't want to stay on Xolair any longer, go right ahead. No one here is expecting you to " blindly " accept anything. Addy Group co-owner > > > Since I'm not showing any improvement at all after 2+ months on Xolair > and, in fact, seem to be feeling worse in some ways (worse body aches, > numbness and tingling in extremities, sinusitis, colds, weight gain) I > looked up some statistics on Xolair. I found this from the Canada > Respiratory Journal in 2006: > > ... in the evaluation by Bousquet et al ... , 38% of patients had a > response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of > patients who responded at 16 weeks had responded at four weeks; 87% had > shown a response by 12 weeks. > > I do know that IgE can be accurately measured while on Xolair - that was > in an April 2007 journal of clinical allergy and immunology. Obviously > some people need more based on their IgE and probably other factors and > some need less. I'm really concerned about what this is doing to me. > It is completely unacceptable to expect anyone to blindly accept a drug > not working for many months. I certainly would not take an aspirin for > a headache now and be willing to wait six months for it to work. If it > doesn't work, there's something wrong and it needs to be investigated. > That isn't happening with Xolair. I am no little bit annoyed about it. > Genentech only puts out the party line - they're not answering some > serious questions. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Good that it worked for your son. Bad that he has had to stop taking it. I think EVERYONE in this group needs to keep this email address handy. www.xpansions.com (Maybe it should be be posted on the Xolair Group home page!!) Xpansions is the on line Xolair support group through Xolair's website. They have assistance for people who can not afford their Xolair. Talk to one of their SPOC nurses about getting assistance. It does not make sense that your son has to stop taking a medicine that has been successful in controlling his allergic asthma. Does your son's doctor know he has stoped taking it?! Call SPOC and let us all know how you made out! Good luck Kathe --- Herrian Haulers <herrin@...> wrote: > > My 30 year old son has suffered with severe > persistant asthma since birth. None of the drugs > available were able to control his asthma. He > started on Xolair - December of 2004. It took over > a year for us to notice he was getting better. > Since then he has continued to improve - also > helping his hay fever. > > We have been paying $40.00 co-pay a month for his > Xolair. Last month we were informed his co-pay for > Xolair has increased to 50% - which leaves us a > balance of $1056.00 per month. We are not able to > pay this amount. He has not had his Xolair for 5 > weeks and his asthma has worsened. We know Xolair > was helping. > > Sincerely, > > Hartnett > > ----- Original Message ----- > From: pyle456 > > Sent: Wednesday, May 16, 2007 6:13 AM > Subject: [ ] Re: Xolair Stats - Wonder > if I'm having side effects > > > I take exception to the phrase " blindly accepting > a drug not working > for months. " All of us have made the decision to > take Xolair after > conversations with our doctors, families and doing > our own research > and, most importantly, our own risk-benefit > analysis. Further, there > are any number of drugs on the market that take > weeks to months for > users to see full effect (SSRIs for one example). > And there are many > drugs that have many more side effects that > require patients to play > musical chairs with before they find the right one > (blood pressure > medicine, for example). > > I know that Doug, , and I (and many > others on this > board) have been so sick and suffered so terribly > in our quality of > life that we thought it well worth the wait to > stay on a medicine > that had a response time as variable as Xolair's. > For us it has paid > off in any number of ways. I'm not the only one > who is grateful for > the success I've had on Xolair - my husband, my > parents, my friends > are all grateful to have " the old Addy " back. > > How many people were in the sampling of the > studies you read? What I > read in the study you have reported here, most > patients responded > within three months but there are some that > didn't. Did it say what > percentage of those responded later? Or did they > just give up. > Xolair reports an average response time of four > months, but it does > take some people longer. Doug is a perfect example > of this - it took > him a year and it has changed his life, > dramatically decreasing the > toll that the years he's spent on prednisone has > taken on his life. > > You say that they can test for IgE while on > Xolair. Does your > doctor have the ability to do this? Because the > old IgE tests cannot > tell the difference. Does he have the newer test > than can tell > this? My doctor is still unable to do this. Yes, > he can test for > IgE while I " m on Xolair but the test he has > doesn't distinguish > Xolair-bound from free floating IgE. If your doc > doesn't have it > either, the manufacturer is probably still waiting > on a patent before > making it available for sale widely (and then it > may be too expensive > in the first few years for most practices to buy > it, who knows?) > > If you don't want to stay on Xolair any longer, go > right ahead. No > one here is expecting you to " blindly " accept > anything. > > Addy > Group co-owner > > > > > > > > Since I'm not showing any improvement at all > after 2+ months on > Xolair > > and, in fact, seem to be feeling worse in some > ways (worse body > aches, > > numbness and tingling in extremities, sinusitis, > colds, weight > gain) I > > looked up some statistics on Xolair. I found > this from the Canada > > Respiratory Journal in 2006: > > > > ... in the evaluation by Bousquet et al ... , > 38% of patients had a > > response by 4 weeks and 64% by 16 weeks. Fewer > than two-thirds of > > patients who responded at 16 weeks had responded > at four weeks; 87% > had > > shown a response by 12 weeks. > > > > I do know that IgE can be accurately measured > while on Xolair - > that was > > in an April 2007 journal of clinical allergy and > immunology. > Obviously > > some people need more based on their IgE and > probably other factors > and > > some need less. I'm really concerned about what > this is doing to > me. > > It is completely unacceptable to expect anyone > to blindly accept a > drug > > not working for many months. I certainly would > not take an aspirin > for > > a headache now and be willing to wait six months > for it to work. > If it > > doesn't work, there's something wrong and it > needs to be > investigated. > > That isn't happening with Xolair. I am no little > bit annoyed about > it. > > Genentech only puts out the party line - they're > not answering some > > serious questions. > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ 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...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Suzanne, I think some DRs are just so darn selfish. I worked at a hospital the house DR my last night was called up because my coworker in the ICU noticed I was not talking right and my face was swollen. He checked my B/P it was only 78/50. I was told to just relax it is in my head take a benydryl and finish my shift. My shift was finished all when an hour later the code was called on me and I ended up on a ventilator. The ER DR always came to the codes he wrote that this was work related and not to return. The hospital DR in cop court tried to lie and say he never saw me. To bad it was already written up by my coworker. IT is so sad that these Dress are allowed to continue to practice medicine. I want to add there are some good DRs that would never treat anyone badly. ----- Original Message ----- From: Suzanne Sent: Tuesday, October 02, 2007 7:16 AM Subject: Re: [ ] xolair It could be worse, you could have the doctor you've worked for an extremely long time see you suffering again and again and tell you that he thinks it's all in your head. And he should know better, he's an internist! He fired me for leaving the building in the midst of an allergic reaction and going to the ER. Dread the upcoming season too because the financial crunch of being on Xolair and not having a job is going to make it a meager one. So how many here have had side effects from the X? Suzanne meencantador <meencantador@...> wrote: I am starting the shots 2x a month scared bc of the financial end. Will it ever end? Holidays are up and coming. Last thing I want to do is spend it alone but I feel am getting pushed that direction. I am getting sardonic remarks. " Honey, I am getting Christmas candles, oh wait, are you allergic to that too " . I am tired all around. I am doing the shots in hope for the best. I am having a tough time seeing the best when I feel they should add on to the local hospital wing in my name, I am there so much Take care B ~~~~~~~~~~~~~~~~~~~~~~~~ " Don't mess with me because I've sold cars, stolen guns and made grown men cry... " --------------------------------- Need a vacation? Get great deals to amazing places on Travel. Quote Link to comment Share on other sites More sharing options...
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