Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Connie, My 16 yr old daughter's IGE is 6,000 and I thought that was extremely high. She is going out of her mind with the intense itching 24/7. I can't imagine what your friend is going through. I will keep her in my thoughts and prayers. We are in the process of trying to get xolair approved also. Because it is approved for asthma only our insurance is giving us a hard time. good luck to your friend. jean ---- tresses77 <tresses77@...> wrote: > Hi everyone. I just got back from vacation and talked to my friend with > extreme excema. Marie it sounds pretty close to you!! HerIGE level was > 30,000. The doctor had never heard of anyone like this. As I mentioned > before he is the only Dr. familiar with Xolair in my area. He is going > to give Xolair a try with her. But what she has found out so far is > that it is going to be extremely expensive even with her insurance.They > are also fighting covering the little they would pay! So I'm not sure > yet if she can go ahead. Marie did it help a lot with your excema? She > is a young single girl and I just am concerned with the expense and > maybe it not helping. I told her she could visit this site for more > info. We'll see. She has stopped taking her allergy shots and switched > body lotion for the itching. That has helped some. I still am just > shocked that allergists etc around here have no knowledge of this drug > that I believe saved my life!!! > Connie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 I used to have excema horribly for many months at a time. A flippant dermatologist told me to keep clean damp cloths over the affected area. Completely impossible although I tried to do it when I sat down or laid down. He said that at one time they would put the patient into the hospital for a couple weeks and literally wrap them up in moist cloths the whole time. Before that another dermatologist told me to put the cortizone cream on my leg (the excema covered most of the front of my leg) and wrap it up with plastic wrap - especially at night. It helped some but did not clear it up. I was reading somewhere recently - think it was in a professional journal for doctors - about the possibility of Vitamin B12 as being lacking in people with excema or that there was a need for it. Ironically that was truly my case. I also realize that in the last several months I haven't had any more excema. For a few days I've had a sort've " under the skin " strong itching sensation on the wrists and arms but it goes away much more quickly and I'm not scratching myself raw. I've been on Xolair for 1 year as of March 23rd. It probably has helped re excema and I believe the B12 & B6 did too. (prescription strength) I wonder if some of us with severe allergies might not have absorption problems too through our gastrointestinal tract. One specialist told me I'm lacking the enzymes to absorb what I need. That makes sense in view of the changes. --------------------------------- OMG, Sweet deal for users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 --- In , " tresses77 " <tresses77@...> wrote: > > Hi everyone. I just got back from vacation and talked to my friend with > extreme excema. Marie it sounds pretty close to you!! HerIGE level was > 30,000. The doctor had never heard of anyone like this. As I mentioned > before he is the only Dr. familiar with Xolair in my area. He is going > to give Xolair a try with her. But what she has found out so far is > that it is going to be extremely expensive even with her insurance.They > are also fighting covering the little they would pay! So I'm not sure > yet if she can go ahead. Marie did it help a lot with your excema? She > is a young single girl and I just am concerned with the expense and > maybe it not helping. I told her she could visit this site for more > info. We'll see. She has stopped taking her allergy shots and switched > body lotion for the itching. That has helped some. I still am just > shocked that allergists etc around here have no knowledge of this drug > that I believe saved my life!!! > Connie > Connie: Holy cow! Hey, I'll fax the Doc my blood work that shows the 45,000 IgE; maybe he'll frame it? (lol). I had posted about 2 weeks ago how my insurance company waited for my last round of shots to require the Doctor to submit notes, plans, etc. before they'd allow Curascript to send me my meds. The Doctor sent them right away (twice), and Curascript was diligently following up, as was I. My insurance (Oxford) said they'd never got the doctor's fax. It's a scam. The longer they make you wait for the shots, the more they save. Think about it: Chose a number, patients, that is, and multiple that times the $ they saved on me. This was a long answer to your question, Connie. Is Xolair helping. It has had a MAJOR difference on my suffering! So much so that within the last two weeks without it, I have had a major flare. I'm miserable. Plus, it screwed up all my doctors' plans, and mine, so that I'd be comfortable (skin-wise) for my hip surgery on April 14th (my second, thanks to the side effects of Prednisone). I had to call my dermatologist Wednesday and beg for cortisone shot (we had tapered them, thanks to Xolair). Then I'll need another the week before the surgery because I regressed so much! I'm still on other meds to help the excema (immunosuppresants) that we hope to taper the longer I'm on Xolair. So...my advice is to do anything you can, and I mean anything, to make money to pay for these shots. Be creative. Find items in your home & sell them on E-bay. ANYTHING! Because the difference will change her life, albeit, maybe a little slowly, but one day she'll stop and realize she's not tormented by the itch. Oh, there will be days when she'll itch a bit more than a normal person would, but I know, really, what she's going through and she needs to be on Xoliar. Or, little by little, she will begin to withdraw because of the misery. DO IT!! Best of luck and keep us posted. Marie P.S. It took me a year to find a doctor to be an advocate for me to start Xolair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Has anyone tried contacting Genentech for help getting affordable Xolair in situations like this? Probably a long shot but maybe worth a try. --- In , " tresses77 " <tresses77@...> wrote: > > Hi everyone. I just got back from vacation and talked to my friend with > extreme excema. Marie it sounds pretty close to you!! HerIGE level was > 30,000. The doctor had never heard of anyone like this. As I mentioned > before he is the only Dr. familiar with Xolair in my area. He is going > to give Xolair a try with her. But what she has found out so far is > that it is going to be extremely expensive even with her insurance.They > are also fighting covering the little they would pay! So I'm not sure > yet if she can go ahead. Marie did it help a lot with your excema? She > is a young single girl and I just am concerned with the expense and > maybe it not helping. I told her she could visit this site for more > info. We'll see. She has stopped taking her allergy shots and switched > body lotion for the itching. That has helped some. I still am just > shocked that allergists etc around here have no knowledge of this drug > that I believe saved my life!!! > Connie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 > > > > Hi everyone. I just got back from vacation and talked to my friend > with > > extreme excema. Marie it sounds pretty close to you!! HerIGE level > was > > 30,000. The doctor had never heard of anyone like this. As I > mentioned > > before he is the only Dr. familiar with Xolair in my area. He is > going > > to give Xolair a try with her. But what she has found out so far is > > that it is going to be extremely expensive even with her > insurance.They > > are also fighting covering the little they would pay! So I'm not > sure > > yet if she can go ahead. Marie did it help a lot with your excema? > She > > is a young single girl and I just am concerned with the expense and > > maybe it not helping. I told her she could visit this site for more > > info. We'll see. She has stopped taking her allergy shots and > switched > > body lotion for the itching. That has helped some. I still am just > > shocked that allergists etc around here have no knowledge of this > drug > > that I believe saved my life!!! > > Connie > > >When all else fails, try the media. Get her situation out to the press and you never know, it might be picked up by larger papers and Genentech or a benefactor may respond. Just a thought...Marie Quote Link to comment Share on other sites More sharing options...
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