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Idiopathic Anaphylaxis (Page 1)

Exclamation I have life threatning allergic reactions that require code 3 to the er at least once amonth I am on prednisone advair benadryl albuterol atrovent I do have asthma I crash so fast that they want to put in aporacath because they cant get an iv in I am tired of almost dying so much I have had all the tests done and now they are looking at porpheriadoes anyone out ther have idiopathic anaphalaxis
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replied April 5th, 2005
Idiopathic Anaphlyaxixs
Yes I have ha it 6 years now and my baby too. Nothing is reaaly helping us I am daily having issues withit I think I am immune to the meds. Did you have any hope too :cry:
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replied April 5th, 2005
Idiopathic Anaphlyaxixs
Yes I have ha it 6 years now and my baby too. Nothing is reaaly helping us I am daily having issues withit I think I am immune to the meds. Did you have any hope too :cry:
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replied June 9th, 2009
idiophathic anaphlyaxixs
i have had idiopathic anaphlyaxixs for the past 3 years. i am no further forward. have had 8 this year already but live in hope that the will durn themselves out as quickly as they came. good luck. if you have any new information please share.
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replied June 13th, 2009
Hi, i have had IA for the last six months and have had 18 attacks in that time! im currently seeing an immunologist on a regular basis and take a coktail of steroids and antihistamines daily to try and prevent/reduce severity of attacks. after trying to reduce the steroid dose on several occasions with little success i have now been asked to remain on 40mg a day at least until i see my immunologist again in 3 weeks time. just wondering how old u guys wer when u 1st started with IA? I only ever suffered with urticaria up until being 20, the people at anaphylaxis campaign thought this was very unusual, saying that anaphylxis would normally start much younger but from what i have read it is common for IA to develop later on. xxxxx
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replied June 13th, 2009
hello.
it's nice to hear from another IA suffer. I know where yo are coming from, my firat year i had 15 plus and it's a real nightmare.....but they did slow down (a bit).
What is urticaria?? I was 28 when i had my first IA. Never had a allergie in my life but have two over auto immune conditions. My g.p has never mention a immunologist just go to the allergy clinic once a year (if i'm lucky).
Hope this helps.
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replied June 14th, 2009
I know, its nice to know there are other people out there like us! even if theres only a few! doesnt sound like thyv slowed down 2 much if uv already had 8 attacks this year! urticaria is also known as hives, its a common skin reaction. Odd that u havnt seen an immunologist, r u in UK?? And once a year is rediculous! maybe if thy had got it under control but thy clearly havnt! i have seen my immunologist 4 times in 6 months! interesting about the age, a lot of ppl seem to develop IA in there 20's. have thy put u on any medications for ur IA, steroids, antihistamines, etc....??
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replied June 14th, 2009
Hello,
Yea am in uk. are you?
not really taking any meds on a daily basis, i take 3 differnet antihistamines when i start to swell (which is weekly and can last for days) i call myself the elephant women!!lol!! Then i will take a five day course of steriods which help but hate taking them. only take epipen when airways close. how about you??
i don't get hives too often, when i do get them is is usaully after i have exercised.
we have to stay positive and keep smiling.xxx (even thou it's rather hard)
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replied June 15th, 2009
Im in UK too! hehe! Yeah i know what u mean about elephant woman, i get tht aswell, lol! I have been on daily antihistamines for about 2 years, was put on them as suffered from rashes everyday tht often got infected, the list has just grown and grown since then as i have progressed from rash to very bad rash to even worse rash to anaphylaxis! lol! i now take desloratadine 5mg twice a day, chlorphenamie(piriton) 4mg once a day(4 times if having any kind of reaction or recently been in anaphylaxis, telfast 180mg once a day and ranitidine 150mg twice a day I only used to take steroids for 5 days after an attack but as soon as i stopped the steroids i had another attack so i never got off 40mg, thats y i went on to long term steroids, the idea being to reduce the dose slowly to wean me off them, this didnt work either. we were in the process of trying to find a maintainace dose for me but have had attacks at 10mg and below so far. first time i got down to 4mg, second time 5mg, third time 10mg, i then kept having further attacks even though i was on 40mg which required iv hydrocortisone, iv piriton and nebulisers so now im remaining on 40 until i see the immunologist on 9th july! il prob look like a hippo by then! I take Alendronic Acid once a week to prevent osteoporosis as a pesult of steroids, yeah im 20 and on a drug for post menopausal women! I agree about staying positive,it is hard as it affects my work, plans, whole life really! my friends always say thy wouldnt be able to cope but uv just gotta try and get on with ur life havnt u! xxxxx
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replied June 15th, 2009
oh and yeah i only use epipen when airway starts to close up, it often takes 2 to get me near right though and even then i tend to have biphasic reactions which require more pens. xxx
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replied June 15th, 2009
am just so shocked that u dont take anything daily! how to thy expect to control your attacks??!! xx
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replied June 16th, 2009
Tell me about it!!!! sounds like a living nightmare when you explain it to anyone not dealing with it but you just muddle through and look like the elephant women most of the time!lol!! I don't think i could take the pills and potions daily as they make me sooooooo sleepy!! also have a condition called anyklosis sponduliatus (posh arthritus, lol!) so steriods make it really painful. (can you hear the violin strings , hee!hee!) i just try to ignore the swellings, hives most of the time!! i went for some blood tests today and need to see my g.p next week so might see if he can refer me to see an immunoglist as the allergist doesn't want to see me till next year!! And he just keeps saying that it will burn itself out but will take serval years. have you heard the same??
really nice chatting with you, can't believe that i can speak to someone who understands!!!xx
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replied June 16th, 2009
Same here! is nice to talk to someone who knows exactly what its like to live with this, its such a big part of our lives!
Gosh that is a posh name isnt it-lol! U could maybe try daily antihistmaines vo, could well help with the hives if thts something u suffer with a lot. Some of them make me drowsy but the newer types bypass the brain and so dont tend to have tht affect, they are also active for much longer so it should only be once a day dosing( im on twice a day though). Yeah ask you GP about seeing an immunologist, dont know where abouts in uk u are but im near Manchester so i see an immunologist at Salford Royal (hope hospital). Still cant believe ur allergist! next year! thats awful! id be shocked if my immunologist left me longer than 8-10 weeks at the moment! thy cant just dump you-lol! Have you got a good GP?? Hope so!
I have been told tht IA Patients often go into remission but this is usually after being tapered off steroids, it doesnt tend to just happen. That was there hope with me but dont think its going to happen. Some ppl have steroid dependant IA where thy cant drop below a certain threshold and others have malignent IA which requires high doses of steroids to control (at least 30mg a day). I saw my GP this morning, he was on about some steroid sparing drug which i may be started on if i have to remain on a high dose but he wants to wait till after i see immunolologist as she will know more about tht kinda stuff.

if yor on facebook you can add me if u want (amanda jane harrison)im on there a lot!xxxxxxxxxxxxxx
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replied June 17th, 2009
will do.xxx
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replied June 17th, 2009
There are loads of you on facebook!!lol!! what is your profile pic?? have sent a message to a couple but then gave up lol!! xxx
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replied October 12th, 2009
I can't believe it's taken me this long to find these posts. I've had IA for 1 1/2 years. I've been in the ER 6 times in the last 2 months. I'm beginning to know them by name there. ha. This is the MOST frustrating condition ever. We thought we had it under control with a cocktail of medications(Oral Albuterol 2x a day, Zantac 150 2x a day, Allegra, Singulair, Zyrtec and Nasonex) I always start with hives. They are typically on my abdomen and look like a map of the world. If I get 50mg of benadryl in me I can sometimes control it. This happened to me today, and it's gotten worse. Then I go to bed and wake up because I can feel my throat closing and breathing getting shallow. I took 50mg of prednisone and 50mg of benadryl, which will take a while to kick in. I'm sitting here right now with my epi on my lap ready to use it. I try and go as long as I can before using it. I just hate taking the prednisone because now my allergist will make me stay on it and ween off for several weeks. However, this is exactly what they would do in the ER, only IV. I'd rather save the $150 and try to get through it myself.
I'm on here doing research to see if I could have IA symptoms that could be for something else. This is sooo frustrating. Oh, and I was 37 when this started.
My allergist also did an additional interesting test on me. He took my blood and spun it down. Then put it into a syringe and into my arm. My arm swelled up with a positive reaction. What this told him was basically I'm allergic to my own anti-bodies. For some unknow reason, the receptor on my mast cells recognize them as an allergen and release histamine. Just wondering if anyone else has heard of this?
Thanks and best of luck to you all.
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replied October 23rd, 2009
Hello, never heard of that test?? but i am lucky if i ever get to see a specialist!!! i am in the uk, and my doc just not that interested!
have you found that yours have slowed down or changed?
i hate waking up with the throat swelling, just don't think that you ever get used to that! i tend not to go into a&e unless i pass out now. i treat as much as poss at home, but that is risky to say the least! but i have a young family and i hate the impact it has on the home.
i also think that my IA syptoms could be something else, the consultant that i have seen ,got to this conclusion very quickly. i thought you only got this diagnoisis when everything else was ruled out.........
i am on no meds, just take silly amounts of different types of anti histamines and steriods when the swellings start, most weeks. but still, what doesn't kill us makes us stronger.
good luck.xxxx
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replied November 24th, 2009
My IA is much more infrequent than yours but the symptoms are the exact same thing. My doctor has had me take hydroxyzine immediately when I notice a reaction and so far it works. I am so tired afterwards (out for a day) though that we are attempting prednisone and zyrtec for my next episode. Hope this helps.
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replied January 15th, 2010
hi all
my daughter who is 11 eleven years old has been diagnosed w/IA and like all you an frustrated and scared at the sametime, the allergiest put her on an anithistiame after her last attack, she has two in the last four months. she is scared when an attack comes on, but as you all know after an attack i am rushing her to ER. I would like to get a second opinion on the diagnotics and also see an immunologist..
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replied March 14th, 2010
Hi
I have had IA for 8 years now. Fortunately for me my first attack was in Chicago IL and I ended up at Northwestern Medical Hospital. What I did not realize until much later was that the doctors there are on the cutting edge of research in IA. I still see one of those doctors every year. My first attack came out of the blue with hives (huge all over my torso), followed by a second attach the next day with lip swelling, the third day with mouth and tongue swelling, throat closing up and huge hives. I ended up in the ER with each attack and the third time they kept me overnight. I ended up on 60 mg a day of prednisone plus several antihistamines.

I have had 8 attacks since then but have finally figured out some strategies that work for me along with advice from my doctor there, Dr. Anne Marie Ditto.'

Here is my advice and hers:
1. Get a copy of the book Idiopathic Anaphylaxis by Roy Patterson (1997) from OceanSide Publications Inc. Providence Rhode Island ISBN0-936587-10-5. It will definitely help you understand the disease.

2. This is probably the most useful advice: buy a blood pressure monitor. When I start "feeling funny or light headed" take your BP, when mine starts falling below 100, I know to make sure someone is with me and have my epipens handy,
Sometimes, by drinking water, lying down and being very still, taking an extra benadryl or ranitidine I can prevent a full blown attack. Dr. Ditto suggested I get the BP monitor and that has been the best advice so far. Sometimes, I am not sure whether I am getting ready to have an attack but by taking my bp can tell. In the past, I have actually driven myself to emergency rooms and waited outside to see if it was going to get worse. Dr. Ditto told me that drinking water can help because it raises your bp. I am also taking a drug called ketofin ( 4 mg a day) that is a mast cell inhibiter-this has helped too. I am now on 4 mg of methylprednisolone every other day as well as bendryl, ranitidine, xyrtec, and singular.
I have had to use the epipen on myself twice and have been to the ER with this about 10 times in 8 years.

When I have a full blown attack it takes a long time to recover and get off the steriods. I am still trying to get off from an attack 2 1/2 years ago. One other interesting thing I have discovered is that when I have been sick with the flu or some stomach bug and am not eating anything, I have very little trouble with this and don't need all my allergy medicines....not sure what the reason is there. I have talked with one other person who has this and she told me she figured out that one of her triggers was wet paint. I have no idea what my triggers are.
Let me know if this helps anybody.
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replied June 28th, 2012
D you eat red meat? Have you ever been bitten by a tick? I have alpha-gal allergy after being bitten by huge number of grass ticks - I also have systemic mastocytosis which gives me severe anaphylaxis - recently narrowed down to being triggered by red meat . I have been fine so far for a month after not eating all mammalian meat - i can eat "feathers and fins" that is chicken, turkey and fish/seafood. I also need to stay away from bovine gelatine products like ice cream and jelly.
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