Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 I go to a large health conglomerate for my health care. My PCP's office is literally across the hall from my allergist/pulmonologist. Last time I saw my PCP, she said they are having EXCELLENT results treating folks with severe allergic eczema with Xolair. They've got patients who've never worn short sleeves or shorts before now wearing them on a regular basis. I would ask your allergist if they will give you the number for the area Xolair rep or ask that person to contact your friend's doctor. Otherwise, get all the info you can off the web and have your friend take it to her next appt. Addy Group co-owner --- In , " tresses77 " <tresses77@...> wrote: > > Hi I am new here and i currently am on xolair for allergic asthma. I am > her today to find out if anyone uses it for other allergic reactions. I > know someone with EXTREME excema.The allergist told her that it is > caused by here extreme allergies--off the charts!So much so that her > mother has written Oprah etc. She has literally the worst case I've > heard of. She has been on prednisone for over a year and takes allergy > shots.Her allergist (of course) hasn't heard of xolair. The area wher > I'm from has only one DR.(mine) that is familiar with xolair. Her skin > is simply awful. the prednisone just makes her comfortable---it doesn't > take it away. Wondering if anyone here may have some info or perhaps > may be in the same situation. I have contacted Xolair already and been > told some mixed messages. She has an appt to see my DR. Her bills will > be out of pocket though cause he is not in her insurance plan. Anyone > with any hope to give out there????Thankyou in advance, Connie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 Thankyou for this!!!!!! pyle456 <coachmac@...> wrote: I go to a large health conglomerate for my health care. My PCP's office is literally across the hall from my allergist/pulmonologist. Last time I saw my PCP, she said they are having EXCELLENT results treating folks with severe allergic eczema with Xolair. They've got patients who've never worn short sleeves or shorts before now wearing them on a regular basis. I would ask your allergist if they will give you the number for the area Xolair rep or ask that person to contact your friend's doctor. Otherwise, get all the info you can off the web and have your friend take it to her next appt. Addy Group co-owner --- In , " tresses77 " <tresses77@...> wrote: > > Hi I am new here and i currently am on xolair for allergic asthma. I am > her today to find out if anyone uses it for other allergic reactions. I > know someone with EXTREME excema.The allergist told her that it is > caused by here extreme allergies--off the charts!So much so that her > mother has written Oprah etc. She has literally the worst case I've > heard of. She has been on prednisone for over a year and takes allergy > shots.Her allergist (of course) hasn't heard of xolair. The area wher > I'm from has only one DR.(mine) that is familiar with xolair. Her skin > is simply awful. the prednisone just makes her comfortable---it doesn't > take it away. Wondering if anyone here may have some info or perhaps > may be in the same situation. I have contacted Xolair already and been > told some mixed messages. She has an appt to see my DR. Her bills will > be out of pocket though cause he is not in her insurance plan. Anyone > with any hope to give out there????Thankyou in advance, Connie > --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 --- In , " tresses77 " <tresses77@...> wrote: > > Hi I am new here and i currently am on xolair for allergic asthma. I am > her today to find out if anyone uses it for other allergic reactions. I > know someone with EXTREME excema.The allergist told her that it is > caused by here extreme allergies--off the charts!So much so that her > mother has written Oprah etc. She has literally the worst case I've > heard of. She has been on prednisone for over a year and takes allergy > shots.Her allergist (of course) hasn't heard of xolair. The area wher > I'm from has only one DR.(mine) that is familiar with xolair. Her skin > is simply awful. the prednisone just makes her comfortable---it doesn't > take it away. Wondering if anyone here may have some info or perhaps > may be in the same situation. I have contacted Xolair already and been > told some mixed messages. She has an appt to see my DR. Her bills will > be out of pocket though cause he is not in her insurance plan. Anyone > with any hope to give out there????Thankyou in advance, Connie > Hi Connie & Welcome! You have found THE person with the worst eczema in the world! I've been treated at Columbia Presbyterian in New York, who then referred me to a Dermatologist/Pharmacologist at NYU in NYC. I have been proclaimed by the tops Docs as the worst case of eczema they have ever seen, and, the most difficult to treat! As I have posted before, my lowest IgE was 10,000, and my highest ever recorded was 45,000, also a record for the Docs. I was seeing an allergist at Columbia,too, and I begged for Xolair, because I believed it would help. He wouldn't presribe it because my IgE's were too high, and, figured the dosage would be needed to be so much more than prescribed. I suggested it to my dermatologist, but he said it was for asthma (I have moderate Asthma). This was over a year ago. I have been suffering with the servere eczema for 8 years. Only your friend knows what I went through. I've been on every conceivable drug, and, of course, Prednisone. It just made me comfortable, too. Plus, I'm going for my second hip replacement in April from the Prednisone (it damaged both my hips). Of course, the weight gain and adrenal exhaustion! Anyhow, my local Doc came across the article on Xolair and said maybe we should try it. I said, " I've been trying to get on that drug for over a year! " He made the magic happen!!! I've been on Xolair for about 6 months. I am off oral Prednisone, and have tapered the cortisone shots so far to every 6 weeks, reducing the mg to only 40 each time, but I remain on the oral immunosuppresent Cyclosporine. Next visit to the Derm we'll probably start to reduce that dose (300 mg daily). I can't believe the difference!!! No one stares anymore, I look like a normal human being, and the pain and misery is gone. I am at the higest dose at 375 mg every two weeks. I hope they eventually allow that to increase, because my IgE production is so severe, I'm not sure I will ever be completely off the other meds. Having siad that, definately get your friend on it. If he needs support or has questions, have him e-mail me directly: marieruffolo@.... Thanks- Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 Thank heavens that you are off that nasty Pred. We call it " Evil Candy " here in the group. I had cataract surgery when I was in my early 40's and two cervical disk fusion's with metal plate in 1998 and 2006 because of all the " Evil Candy " I had taken in my life for asthma. In the 4 years I have been on Xolair, I have had to take pred maybe 3 times but just as a " burst, taper and off " round of it. Speaking of skin problems. For years the dermatologists said I had severe exema and dermatitis till I finally saw a derm who tested me and found Psoriasis. UGH! Xolair does NOTHING for that. I am using STONG steroid creams on the spots. Thank heavens these are not systemic and do not have the side effects of taking them internally. Keep us updated Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 > > Thank heavens that you are off that nasty Pred. We call it " Evil > Candy " here in the group. > > I had cataract surgery when I was in my early 40's and two cervical > disk fusion's with metal plate in 1998 and 2006 because of all the > " Evil Candy " I had taken in my life for asthma. > > In the 4 years I have been on Xolair, I have had to take pred maybe 3 > times but just as a " burst, taper and off " round of it. > > Speaking of skin problems. For years the dermatologists said I had > severe exema and dermatitis till I finally saw a derm who tested me > and found Psoriasis. UGH! Xolair does NOTHING for that. > > I am using STONG steroid creams on the spots. Thank heavens these are > not systemic and do not have the side effects of taking them internally. > > Keep us updated > > > Doug > Group founder >` Hi Doug! Yep. I've been on and off the " Evil Candy " twice, each time on it for a year - a year & a half; gaining 47 lbs. the first time, and 37 lbs. the second!(losing it all before both surgeries). You've really suffered. Re: Psoriasis; have you considered Enbrel? Or, would it be a problem taking it with the Xolair? I've tried Enbrel, but when I learned how Xolair works with the IgE, it made sense that Enbrel wouldn't work because, although it's also an autoimmune disease, it's not related to IgE production (not that I've read, anyhow). Glad it's helping your asthma. And, Connie, anything you need, just ask. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 > > Hi Doug! > > Yep. I've been on and off the " Evil Candy " twice, each time on it > for a year - a year & a half; gaining 47 lbs. the first time, and 37 > lbs. the second!(losing it all before both surgeries). You've really > suffered. Re: Psoriasis; have you > considered Enbrel? Or, would it be a problem taking it with the > Xolair? I've tried Enbrel, but when I learned how Xolair works with > the IgE, it made sense that Enbrel wouldn't work because, although > it's also an autoimmune disease, it's not related to IgE production > (not that I've read, anyhow). Glad it's helping your asthma. And, > Connie, anything you need, just ask. > Marie > My dermatologist and I talked about Enbrel, but he said that the side effects were not worth me trying it. For now, the creams is all I use. Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Whenever I get down to 'low maintenance' of steroids and when I'm off for a few days to get a flu shot - I become a banshee from the hives and itching all over my body. Obviously the steroids help suppress something that surfaces when the dose is altered and it's been like this for a couple years. My being on Xolair the past seven months has had no impact on the hives at all, nor the always present patch of eczema on my leg. But the Xolair has allowed me to get down to 5mg a day this month... I've been down a couple weeks and my face is already all bumpy under the skin. Everything is a trade off. ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
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