Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi, like you I sometimes feel I can't go anywhere. God forbid I sit next to someone who owns cats or birds or anything for that matter with hair, fur or feathers. Shopping malls are out because of all the odors. I have been on Xolair for one year and one month now. I was on 60 mg a day of the evil candy from December through the End of March 2006-2007 and had been on only 20 mg per day prior to that for many years. Sometimes I was able to taper down to 5 mg but that would last just so long before I got another infection or was back on the nebulizer three or four times a day. In May 2007 I had tapered back down to 20 mg. Then went to 15 for two weeks and tapered off 5 mg at a time for at least a two week period - when I was down to 5 mg a day I then went to 5 mg every other day - It was August 2007 - I was completely off of it except for one of my inhalers that contains it. Thank goodness, the swelling in my face if gone and the bruising I would get has stopped - I often looked like someone was beating on me. I just know that you can't taper off too quickly or you can develop cardiac problems. If you stay on it too long you get prednisone induced Cushings symptoms. I always had to take oral potassium as well when on prednisone. Maybe we all need to pick a part of the country we all like, and build a big bubble around ourselves and stay there until they come up with a cure for this. Anne ----- Original Message ---- From: JoyCarol and <jclutterbuster@...> Sent: Saturday, March 8, 2008 9:26:23 AM Subject: [ ] vicious cycle I recently boasted that after eight months of Xolair injections I had tapered my daily prednisone maintenance dose of 20 mg down to 5mg and was going to do 5mg every other day during March. took my sick pet hedgehog to the vet on Monday, that sure wrecks havoc with allergies and sinuses. Wed nite I went to pot luck supper at the church where there were lots of people. By Friday I was gasping for air, this morning Sat. my sinus' are full and draining and it's thick - got an cold or infection coming on. I did six nebulizer treatments yesterday, so it's time to bump the pred back up to 40. It advances quickly. I feel raspiness in my throat and tightness in my chest. By tomorrow I will be in respiratory distress if I don't deal with it now. I am so hoping that 40 mg will be enough to deal with the asthma. The vicious cycle I was in before the Xolair was 60 mg and I'd be able to taper down to 20 - when I tried to taper any lower I'd always have an asthma exasterbation or catch a cold and that would adversely affect my asthma. Sometimes I feel like I shouldn't have left my house, but the discoloration of the mucous tells me it's not asthma but something else that will need an antibiotic in addition to the increased dose of prednisone. I was so happy to be down on the evil candy - color me sad. Maybe eight months is too soon to try and be off evil candy, at what point (how many months of injections) did others successfully taper off? ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 So sorry you're sick and had to bump up the evil candy. I'm not on prednisone due to very severe physical and emotional side effects but have been on high-dose inhaled steroids for years, still with side effects but much more tolerable. In the baseline dose I'd been on before starting Xolair 2 years ago, the steroids are absorbed by the body at a level equivalent to about 25 mg prednisone daily and I doubled that when my asthma flared. I wasn't able to wean down my baseline dose until I'd been on Xolair for one year. Before that, every time I tried to wean down a small amount, my peak flows dropped and I had return to my original dose to get back to normal. After the one year mark, I was finally able to wean gradually, but I've only been able to go to the equivalent of 8mg pred. Everytime I get near that dose, I end up catching a respiratory infection which flares my asthma, requiring a return to my previous baseline or higher to quiet things down. Unfortunately, I flare up due to respiratory infection often enough that I just haven't been able to wean down below the 8 mg level before the next infection hits. So, it's been disappointing because, like all of us here, I had been dreaming of totally getting off steroids and their side effects. But, as I'm sure you'll hear, other folks here have had much better longterm results from Xolair. It just seems to be very individual. Fran > > I recently boasted that after eight months of Xolair injections I had > tapered my daily prednisone maintenance dose of 20 mg down to 5mg and > was going to do 5mg every other day during March. > > took my sick pet hedgehog to the vet on Monday, that sure wrecks havoc > with allergies and sinuses. Wed nite I went to pot luck supper at the > church where there were lots of people. By Friday I was gasping for > air, this morning Sat. my sinus' are full and draining and it's thick > - got an cold or infection coming on. I did six nebulizer treatments > yesterday, so it's time to bump the pred back up to 40. It advances > quickly. I feel raspiness in my throat and tightness in my chest. By > tomorrow I will be in respiratory distress if I don't deal with it now. > > I am so hoping that 40 mg will be enough to deal with the asthma. The > vicious cycle I was in before the Xolair was 60 mg and I'd be able to > taper down to 20 - when I tried to taper any lower I'd always have an > asthma exasterbation or catch a cold and that would adversely affect > my asthma. > > Sometimes I feel like I shouldn't have left my house, but the > discoloration of the mucous tells me it's not asthma but something > else that will need an antibiotic in addition to the increased dose of > prednisone. > > I was so happy to be down on the evil candy - color me sad. Maybe > eight months is too soon to try and be off evil candy, at what point > (how many months of injections) did others successfully taper off? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 It is possible to control asthma without steroids. I cannot take any form of steroid at all. I'm that 1 in 20,000 that becomes psychotic when given steroids. I don't mean mood swings, I mean - the world is a horrible hopeless place so I should kill every one I care about where is the self destruct button on this planet or maybe I should just kill myself because I burnt the toast - crazy! My PCPs swore that Advair wasn't systematic and would only effect my lungs -HA!- it just took two days longer to make me nuts. Anyway, after much boo-hooing about how poor couldn't take the ''sacred steroids'', they gave up and sent me to a specialist who put me on the lovely Xolair. I went from multiple nebs a day to an occassional puff of albuterol. I also take Theophylline and Singulair. And had to restart Tilade after being sealled inside for the winter with the dust mites and mold spores. But I don't feel like a little old lady with half a bottle of cheap perfume on could kill me by standing two isles away in the grocery store and I've been able to drink wine again! [ Hello, my pretty red friend, how I've missed you.] So have faith. I know everyone is different, but I can't be the only steroid free asthmatic on the planet. Also, I've been wondering, what [if any] 'roids were the other quick Xolair responders taking? I'm not a scientist, but it seems like either the stuff should be in there binding things or not. Does it have to go in with a whip and a chair and train the wild molecules to bind! Wouldn't it be funny if it turned out steroids interfered with Xolair? Sorry this was so long. Breathe easy, --- In , " JoyCarol and " <jclutterbuster@...> wrote: > > I recently boasted that after eight months of Xolair injections I had > tapered my daily prednisone maintenance dose of 20 mg down to 5mg and > was going to do 5mg every other day during March. > > took my sick pet hedgehog to the vet on Monday, that sure wrecks havoc > with allergies and sinuses. Wed nite I went to pot luck supper at the > church where there were lots of people. By Friday I was gasping for > air, this morning Sat. my sinus' are full and draining and it's thick > - got an cold or infection coming on. I did six nebulizer treatments > yesterday, so it's time to bump the pred back up to 40. It advances > quickly. I feel raspiness in my throat and tightness in my chest. By > tomorrow I will be in respiratory distress if I don't deal with it now. > > I am so hoping that 40 mg will be enough to deal with the asthma. The > vicious cycle I was in before the Xolair was 60 mg and I'd be able to > taper down to 20 - when I tried to taper any lower I'd always have an > asthma exasterbation or catch a cold and that would adversely affect > my asthma. > > Sometimes I feel like I shouldn't have left my house, but the > discoloration of the mucous tells me it's not asthma but something > else that will need an antibiotic in addition to the increased dose of > prednisone. > > I was so happy to be down on the evil candy - color me sad. Maybe > eight months is too soon to try and be off evil candy, at what point > (how many months of injections) did others successfully taper off? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 My maintenance dose that I couldn't get below was 20mg every other day until I started Xolair in Aug 2005. I was able to stop pred two years later, Sept 2007; and I haven't had any acute episodes ( I was averaging five episodes a year until I started Xolair.) I am still at the highest level of Pulmicort and Foradil, I will try to reduce those next. Debbie **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Well I kicked the Unipyl habit (theopyline) 1-1/2 years into Xolair. Quality of life has improved since severe intestinal cramps stopped. Also, am approaching my 1st anniversary without Prednisone. Was also a junkie for that steroid. Now I really believe I can do without it. We'll see how I fare through the now-begining spring allergy season but I'm pretty optimistic I'm going to fly right through it without a problem. > > My maintenance dose that I couldn't get below was 20mg every other day until > I started Xolair in Aug 2005. I was able to stop pred two years later, Sept > 2007; and I haven't had any acute episodes ( I was averaging five episodes a > year until I started Xolair.) I am still at the highest level of Pulmicort > and Foradil, I will try to reduce those next. > > Debbie > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
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