I have learned to carry my prednisone with me all the time in my purse. I have also learned to change me eating habits to a bland diet with absolutely no spcies- except salt. I have learned to stay well hydrated and get plenty of rest. Stress is a huge trigger for me. I sleep 8 hours a day and try to take naps if I do not feel well. I have decided to go to a psychiatrist to learn new techquices to deal with pain, depression, and anxiety associated with this disease. I am not a mentally ill person, but if I let me fear of death, not breathing, and the depression dealing with this chronic illness take over my life, then I soon will be. I know it sounds odd, but I do not let this be the main focus of my life. I make goals and have plans for my future. I can't think of the next attack. Yet, if I do have another one I know I am prepared. I always carry a mask with me at all times in my purse, along with benadryl (non dye since I am allergic to the one with dye, antihisamine cream, I take xanex- xr when I need to- it helps me during prolong flares, I have the allergist/immounologist card with me at all times. I ensure that I have my insurance card next to my id and my allergist. I also worte my dx on that allergist card. I avoid people with purfumes and smells. I let my teachers know of my limitations on the first day of class. I also wear socks all of the time when I do flare. I put the a/c on during the spring and on constant circulation. I wash my hands religously, and I always let people know where I am always going if I do go out. I avoid smoke and extreme tempratures. I also find that having tight clothing on gives me anxiety. Not to baggy, but some breathing room. I also make sure to watch the weather report everyday. If there is a hight pollen or smoke count then I wear long sleeves, pants, and/ or a scarf. But above all, I live my life.I don't let this rare disease keep me down. I keep forward momentum in my life. I also make sure to have open communication with my allergist. I let him know my fears, concerns, and inquires when I visit. No question is dumb. This is a rare disorder and one has the right to know. I hope this helps
Mine manifested when I was 22 years of age and after a sever gastroenteritis infection which landed me in the ICU. I have read that this could be autoimmune related. I had no known allergies before this, but I did have manifestations of polycystic ovarian syndrome and a rare B12 anemia (pernicious anemia). Plus, autoimmune dysorders do run in my family but, noone has ever had this disease. It came as a surprise but I have learn to cope with this. I am glad that I have found this forum since this disease has an isolating effect to it. You feel like you're the only one with this odd disease. It's not like diabetes or cancer, and most people- including some docotors- have no idea what it is. Most importantly, try to keep postive! I always hope and pray for a new breakthrough with stem cell research and with better and cleaner nonsteroidal drugs. That's my hope
Ask your Dr. about Ketotifen for minimizing the severity of the attacks. I have had 44 attacks in 12 years. Mine I believe is tied to time spent in the Middle East. Ketotifen, Allegra, Pepcid daily and Benedryl and Prednisone as needed help sometimes. Good luck to you all and god bless.
Hello to all of you. My daughter was first diagnosed with IA when she was 13 the pattern with her is that is flares up and builds gradually over days or weeks until the point (despite steroids and anti-histamines) she gets breathless and has stomach ache and has to use the epi pen and go to hospital. A flare can last up to a year on and off then she has long remissions like age 16-22 when she only gets a little uticaria/hives. Then it all happened badly again at 22 - 23 and now she's 27 it's just started again. I won't bore you with all the details but my question is does anyone in UK recommend an immunologist? She has previously seen Dr David Mitchell at St Mary's Paddington in London and she is still in London and experiencing a bad flare up, she is sitting there now all swollen with her epi pen by her side having taken her steroids and anti-histamines and reluctant to go to hospital just to be asked what she is allergic to (life? myself? viruses?) only to be given a steroid infusion and sent home again so any recommendations on the medic front? And what is the facebook group for IA called I'll tell her. Also do any of you also have vitiligo another auto immune disease which she also has?
Here's a link that might be helpful. It's about alpha-Gal allergy which is a allergic reaction brought on by tick bites. There are cases in Spain - have you been on holidays to Spain?
Hi ,I have had this condition in the past but it seems to be in remission now for the last 7 months.
I am a young adult.
I have autoimmune diseases as well ,reiters syndrome (reactive arthritis),Ankylosing Spondylitis ,Asthma ,reoccurring iritis
(autoimmune eye disease).
Everything but the iritis seems to be in remission, I have spent a couple of months on predisone eye drops to get that under control.
My Idiopathic Anaphylaxis started around May 2009 after starting a course of erythromycin antibiotics.
I never had any allergy in my life before this apart from a little asthma.
When I took the first two tablets of erythromycin I just knew something was wrong (light sensitivity / light headiness / hot flushes / dizzyness) but just thought the body was getting used to the medication.
The following day I woke up feeling fine and had breakfast and another tablet and thats when all hell broke loose and I was sent to ER for anaphylaxis treatment (predisone / Promethazine injection).
I came right after a week but after drinking some beer at a friends place the reaction re-occured and I was back to square one.
From that day on the anaphylaxis symptoms were present if I did not take daily the prescribed meds
(promethazine tablets & ranitide) and spent a 3 months living like a zombie from the antihistamine promethazine.
Even with daily treatment I would get surges of inflammation and swelling around the body.
I started taking zyrtec on the third month so I didnt feel sedated but it was not as effective so I had promethazine as a emergency backup.
Never took predisone after the first week.
Doctor never prescribed it he thought it was better managed with antihistamine without steriod dependancy.
I never really got hives just a little on the back between episodes but had more of the dizziness , swelling ,extreme heart rate and blood pressure drop symptoms.
So for a 8 months I ate vertually nothing but rice and tuna.
Stopped drinking everything but water including alcohol (this was one of the worse triggers).
The weird thing is that most things would make it worse but if I didnt take them I still would get reactions.
I was skin tested and everything but dust mites came up as clear ?
The dust mite skin test gave me a rather severe welt on my arm for a couple of weeks so I am allergic to these.
What I couldnt understand is why I still had reactions even if away from dust mite allergins.
Dont know the allergist just said it was idiopathic and my immune system in a severely alert state ready to react to any foriegn antigens (compounds).
He also said my body may also be allergic to itself ?
After 9 months my symptoms settled and I tampered off the antihistimes and started to eat foods other than rice and tuna.
By the twelth month I no longer took any allergy related prescription drugs and ate all the food types I used to.
I havnt had a reaction since but it has left me with something to remeber it by and that is hearing loss.
Not to bad but enough to be aware of the fact.
That is life.
I hope and pray you all get better soon.
I have had 24 anaphylactic reactions since February 2009. My first reaction was to Dimetapp Cold/Flu tablets, which to the point I nearly died. I also had a reaction to Penicillin, Keflex (which is for people who are sensitive to Penicillin), Pork Chops, Chocolate, glue used for acrylic nails, and prawns. Then I've had reactions to absolutely nothing. I can be doing absolutely nothing, eaten/drunk nothing and I'll have a reaction. I have to carry 2 epi-pens with me all the time. I've seen an allergy specialist and got told that nobody can be allergic to chocolate, (I've eaten chocolate since and I'm fine), I've also eaten pork chops again and I'm fine. I'm now going to see an Immunologist this month, so hopefully he/she can sort something out. I've had various tests which all came back negative.
After 1 year and 9 nine months, bone marrow biopsy and many other tests, I discovered that I was allergic to Bounce dryer sheets in the orange box. I have used dryer sheets my whole life, I am 44 yrs old. I don't know if it was due to a formula change, but I will never use any kind of dryer sheets again. My immunologist felt for sure that is was something I was ingesting, but all I have to do is walk down the laundry isle or smell the fumes coming from my neighbors house and I will have anaphylaxis episode. Hope you all will consider chemicals that you are being exposed to. You don't necessarily have to have a reaction each time your exposed.
Hi! What a relief its been to find posts like these! I've had 4 shocks in 6 months and was referred to an immunoligst who carried out some tests after my first two shocks and said it was probable histamine intolerance! Having then had two further attacks i wentback last Friday and they've now told me it can't be anything to do with food but that it has to be IA. They've upped my dose of daily anti histamine and done some alone tests although she didn't tell me what for! So for the past 5 months I've been on a completely restrictive diet and then she just said scrap that! Feel really bewildered by everything! The hospital couldn't offer me any support on my initial diagnosis other than look it up on the internet but now for then to say it's idiopathic . . . That's left me in more of a panic than before! They've just said both times . . This is what it is . . . Now go home! Well that's all good and well but i am still coming to terms with having never had an allergic reaction . . Then all of a sudden to have 4 at the age me 33? And not that i would wish our conditions on anyone its so good to find others like me! So many websites no little about IA particularly the Anaphylaxis. campaign! Is there a light at the end of my tunnel so early in my diagnosis? Would love to hear from you guys x rebekah
HI I have had IA for 15 years and 6 years ago I was referred to an immunologist who put me on Zantac, Zyrtec and Polaramine daily and then I carry Phenergan and an epipen with me at all times in case of an attack. Since I have been on these meds I have not had a full blown attack just very mild uncomfortable itchy sensation, previous to that I was having an attack pretty much every month and almost lost my life 3 times, my blood pressure drops to 60 over 40 and I lose control of my bowels, not good out and in company:)Every time I have an attack there is nothing in common with the last time so its very frustrating. If you aren't seeing and Immunologist then I would strongly suggest you do and you need to have check ups every six months at least, especially if you're on a cocktail of pills cause they need to do blood tests to make sure the pills aren't causing problems. Also someone said thay try to get it under control themselves this is dangerous I know I've tried and almost lost my life, RING AN AMBULANCE IMMEDIATELY, my doctor says even if you just think your having an attack.