mands88
06-14-2009, 06:24 PM
Hi, just wondering if there is anyone out there with idiopathic anaphylaxis. I have suffered from IA for the last 7 months, in this time i have had 18 attacks resulting in hospital admissions. I currently see an immunologist on a regular basis and take high doses on prednisolone and various antihistamines. interested to hear from anyone else with IA as i feel very alone with this condition! :-( xxxxxxxxxxxxxx
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flickfire
06-16-2009, 10:25 PM
I'm sorry about all your troubles. I hope your MD can help you find what you're allergic to. I'm prone to anaphylaxis as well, but at least I know most of the foods that I'm allergic to, and can stay away from them.
But I really wanted to advise you that since you're taking so many steroids, which can destroy the "good" bacteria in your gut, you might want to replace them with some probiotics and/or chinese herbs. They can really help to strengthen your immune system, and maybe even help reduce your allergy symptoms.
I saw a alternative doctor instead of my regular allergist last week, and he diagnosed me with having a yeast overgrowth, and ever since I've been taking the probiotics and the herbs, he prescribed, I feel so much better, and I'm slowly adding new foods to my diet that I wasn't eating before, and all the pain, bloating and gas that I had is gone.
Maybe those things can help you too. Good luck.
But I really wanted to advise you that since you're taking so many steroids, which can destroy the "good" bacteria in your gut, you might want to replace them with some probiotics and/or chinese herbs. They can really help to strengthen your immune system, and maybe even help reduce your allergy symptoms.
I saw a alternative doctor instead of my regular allergist last week, and he diagnosed me with having a yeast overgrowth, and ever since I've been taking the probiotics and the herbs, he prescribed, I feel so much better, and I'm slowly adding new foods to my diet that I wasn't eating before, and all the pain, bloating and gas that I had is gone.
Maybe those things can help you too. Good luck.
susie35
07-19-2009, 08:33 PM
Hi, just wondering if there is anyone out there with idiopathic anaphylaxis. I have suffered from IA for the last 7 months, in this time i have had 18 attacks resulting in hospital admissions. I currently see an immunologist on a regular basis and take high doses on prednisolone and various antihistamines. interested to hear from anyone else with IA as i feel very alone with this condition! :-( xxxxxxxxxxxxxx
hi there, you are not alone, there are quite a few of us who have IA, i have suffered from it for over 9 years now, and have lost count the times i have been in and out of hosptial, and in icu with it, i have been on prednisolone for 5 years and various antihistamines, they did control it for a while, but for the last 13 months i have been on a drug called azathioprine, which was working well but the last couple of months the attacks have crept in again.i have found out over the years that there is not much support for IA in the uk like other countries, because it is a misunderstood condition they are always looking for a trigger and there is not always one, if you would like to know more about it, or of any good web site i would be gald to help you has i have done alot of research on this over the years
hi there, you are not alone, there are quite a few of us who have IA, i have suffered from it for over 9 years now, and have lost count the times i have been in and out of hosptial, and in icu with it, i have been on prednisolone for 5 years and various antihistamines, they did control it for a while, but for the last 13 months i have been on a drug called azathioprine, which was working well but the last couple of months the attacks have crept in again.i have found out over the years that there is not much support for IA in the uk like other countries, because it is a misunderstood condition they are always looking for a trigger and there is not always one, if you would like to know more about it, or of any good web site i would be gald to help you has i have done alot of research on this over the years
mands88
07-20-2009, 04:21 PM
HI, nice to here from you. im still struggling terribly, in the month and a bit since i last posted the number of attacks iv had has gone from 18 to30 if not more. I was admitted to hospital every week in june, then i had a 2 week brake after starting cyclosporin and remaining on the high doses of steroids but as the steroid dose reduced i ended up back in hospital with my worst reaction by far. i also tend to have rebound/biphasic reactions. Saw my GP today and he told me not to be too dissapointed yet as it can take a good few weeks for cyclosporin to fully kick in, so fingers crossed i will manage to get a bit lower yet. My immunologist started me on the lowest dose of 1mg per kg so this can be incresed if neccessary. Seeing her again on thu so will see what happens. xxxxxxxxxxxxxxxxxxxxxxxxx
susie35
07-21-2009, 12:44 AM
HI, nice to here from you. im still struggling terribly, in the month and a bit since i last posted the number of attacks iv had has gone from 18 to30 if not more. I was admitted to hospital every week in june, then i had a 2 week brake after starting cyclosporin and remaining on the high doses of steroids but as the steroid dose reduced i ended up back in hospital with my worst reaction by far. i also tend to have rebound/biphasic reactions. Saw my GP today and he told me not to be too dissapointed yet as it can take a good few weeks for cyclosporin to fully kick in, so fingers crossed i will manage to get a bit lower yet. My immunologist started me on the lowest dose of 1mg per kg so this can be incresed if neccessary. Seeing her again on thu so will see what happens. xxxxxxxxxxxxxxxxxxxxxxxxx
hi there, it does take a few weeks to start to work it took the azathioprine the same as it is from the same family of drugs, and you do the same as me go biphasic which always sames worst than the first one, trust me it does get better even though it may not same like at the moment.
Its like walking around with a time bomb inside you, you just dont know when it is going to go off, i am gald i am off the steriods now only go on them when i have an attack,i dont know about you ig in a cycle of a six month period where i have a good six months then a bad six months, i can handle the attacks but the ichting drives me mad it feels like my skin is crawling when it starts.
it is nice to talk some in the uk who has it as the people i have only managed to talk to have been in the us
hi there, it does take a few weeks to start to work it took the azathioprine the same as it is from the same family of drugs, and you do the same as me go biphasic which always sames worst than the first one, trust me it does get better even though it may not same like at the moment.
Its like walking around with a time bomb inside you, you just dont know when it is going to go off, i am gald i am off the steriods now only go on them when i have an attack,i dont know about you ig in a cycle of a six month period where i have a good six months then a bad six months, i can handle the attacks but the ichting drives me mad it feels like my skin is crawling when it starts.
it is nice to talk some in the uk who has it as the people i have only managed to talk to have been in the us