idiopathic anaphylaxis

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Sewloon

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Hi I also have had this for the past 10 years, used to be I could just take Beneydryl and be fine then each case got worse. Now I have Amenesia, and taking lots of anit-histamines. Went to Mayo Clinic in MN a few weeks ago and going back Aug 7-11 girlfriend is staying with me. they are going to do a bone marrow test, brain cat scan I would image, not sure if the two are related because of loss of oxygen to brain, and I will see neurolgy, and then back to allergist. I understand what you are going thur, do you go unconcious??? I can't work and its frustrating to have good days and bad days and not know when the next attact is going to happen,

Nancy

your not alone :) there got to be an answear
 
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
 
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 fooRAB 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 steroiRAB, 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 fooRAB 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.
 
Hello !
You're not alone. I have been in and out of ER's for so many times now, I lost the count. They've done every single allergy test out there, both the skin and blood tests. Everything is negative. And right now I've been having hives for the last 3 weeks. I'm taking antihistamines but they seem to be not working. Any moment my throat could close up :( What is difficult is my doctors are telling me to stop stressing because stress and anxiety could make the situation worse. I don't know what to do :(
 
I had 28 attacks in 2005 and was diagnosed with Idiopathic Anaphylaxis. I learned very quickly, after two trips via arabulance and staying in ER for 4-6 hours per visit that I had this condition. The ER techs would treat me with what they called the "Cocktail" basically, they had an IV started, then they would inject liquid Benedryl, and 2 other meRAB which would get rid of all the synptoms and leave me sleeping and weak. I was blessed to have met my allergists while I was hospitalized the second time. My syptoms would usually start out with feeling in bowels that I had better get to restroom quickly. Then the diarhea would set in. It was followed by nausea, vomiting. I would feel like I was extremely hot, my skin would flush (Rash) with lots of itching from head to toe. The diarhea would get really bad it would keep occurring every two to three minutes and would be like liquid. The vomiting would increase as well. After a while of this I agreed to go to hospital. Went via arabulance to hospital a few minutes away. While there they were attempting to give me oxygen because of low level in blood. That did not last long, I started going at both enRAB again in ER. I went into Shock. Another ER person cmae around the corner and saw what was happening and got me an injection of something. He injected me right in the stomach. Things subsided. They did CAT scan and kept me for three days. It got to be an expensive thing. But now things are much better. I still take meRAB on a daily basis. I hope this is helpful.
 
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
 
Which antihistamines do you take? Some are more potent than others (Phenergan is perhaps the most potent of all, but it also causes the most drowsienss)

Taken right at the start of an attack, 25mg of Phenergan might be enough to stop the attack progrresing, especialy if you also take a non drowsey, long acting antihistamine such as Zyrtec every day, wether or not you have symptoms.

Next step would be for you to carry an epi-pen with you.
 
HI, nice to here from you. im still struggling terribly, in the month and a bit since i last posted the nuraber 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 steroiRAB 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
 

Thanks for your comments. I do carry epipen with me and I keep it up to date. I also carry Benedryl just in case. I also wear a necklace which states I have IA.
As far as meRAB that cause drowsiness, I cannot take them as I work for an employer that will not let me work if I use drugs that cause drowsiness.
Right now all seems to be going good. Have not had an attack since Septeraber 2009. But, from January 2005 till then, I had way too many. Just about every two weeks. Bad ones too.
Thanks again for your comments.:wave:
 
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 borab inside you, you just dont know when it is going to go off, i am gald i am off the sterioRAB 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
 
A daily non drowsy antihistamine (such as Zyrtec or Claratin) might be a wise move if you have another attack in the future - having your system preloaded with an antihistamine would greatly reduce any attack that did occur.
 
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