I'm 56 and have had atopic dermatitis (eczema)my entire life. The worst of it was in my mid thirties with an IGE count of 26,000. Believe me, I was a bloody mess! I've been taking 50 mg of Atarax and 1 tab of EES-400 daily for the past 25 years (taking up to 4 tabs a day if I flare up) and its improved my quality of life greatly. My DIET was pitiful when I was young. I ate out of cans and lived on junk food. Once I began eating plenty of fresh green vegetables (raw and steamed broccoli, spinach, romaine lettuce etc.) eliminating soda pop (I replaced it with Appollinaris German Mineral water) and ALL preservatives (don't eat ANY frozen food) from my diet, my skin cleared up remarkably. I think stress plays a big part too. Try to walk 3 to 7 miles per day. I hope this information helps. W.
I am the lone ranger? with a chronic fungal pulmonary condition since 2005. My IGE is only 2100 - which was very high for me. I am treated occ. with steroids and antifungals. They help but finally changing my diet - no carbs - as they turn to sugar and feed the fungus - has helped the most - and no bad side effects as with the drugs!
Check with Doug Kaufmann about fungus and all allergies - I learned a lot from him.
March 17, 2011
Hoping to discover my problem today, I have a 3,650 count, which Im almost embarrassed about posting seeing some of the other totals here, however, my asthma attacks are proving fatal
07- Summer,on the way to football practice, I play and coach, had to turn around and go home, took 5 treatments, ambulance called, pulse 02 (55%), passed out, 8 day coma, no memory loss but mass motor skill reset,
had VERY bad pattern eczema (genetic- same spots as my dad) and was unable to wear shoes in the 7th grade for 3 weeks.
'12 Xmas Eve, 2 days really struggling, called roommate to come take me to hospital, 90mph, passed out en route, arrive 0% pulse 02,for recorded 20 min, convulsions, 2 day coma,
'13 February, failed SSi lung test, lost benefits, pneumonia for 4 months, took prednisone to get to clinic, referred to university, for PTSD and pulmonary eval
currently experience odd dermatome irritation, (softball sized patch centered on left scapula itches very badly prior to attacks
IGE levels 3,650
CT Scan, - mild scarring R lung
Spirometry tests (2) , Baseline 60%, post medication 60% :(
2 sleep tests, discovered apnea at REM onset, so ive been sleeping almost 2 hrs a night for about a decade
prednisone is my only recourse, but there must be some middle ground
between suffocation and scaring people with prednisone rages.
evicted, homeless, cabulance wont pick me up because I have no phone, (15 days now, knee deep in affidavits from Univ physicians,
they also wont take me to counseling and my clinic dr, the last one of 5 who would actually commit to treating me, is RELUCTANT to prescribe more prednisone without more results, so im being oxygen (rescue med) rationed for "safeties sake'
between insomnia from nebulizer treattments and prednisone, and the sleep apnea I slept a TOTAL of 12 hrs in the 7 days prior to my 2nd coma, and slept in teh bathroom sitting up, the two days prior, lying down makes it worse.
any thoughts, theories had allergy test, wildly allergic to lots of things, -birch, blue grass, cats, dogs,
-negative for aspergillosis
everyone seems to be hoping someone else will do something,
and i can no longer afford the 10% drop in lung function per receptionist, fighting to get anything done, without even medication to rescue myself,
and little to no faith in ER since my condition is so bizarre,
specialist w 6 months of tests have no clue, what chance do i stand with an ER doctor with 45 seconds notice.?
Immunoglobulin E (IgE) is a class of antibody that has only been found in mammals. It plays an important role in allergy, and is especially associated with type 1 hypersensitivity.
Atopy or atopic syndrome is an allergic hypersensitivity affecting parts of the body not in direct contact with the allergen. It may involve eczema (atopic dermatitis), allergic conjunctivitis, allergic rhinitis and asthma.
Atopic individuals (people who suffer from true IgE-mediated allergies) can have up to 10 times the normal level of IgE in their blood .
IgE may be an important target in treatments for allergy and asthma.
Hope you find this information helpful.
MY DAUGHTER IS 5 YEARS OLD,HAVING IGE LEVEL 361 LU/ML,OFTEN SUFFERING FROM COUGH & COLD. HOW SOULD SHE GET RID OF THIS RECURRENT SUFFERINGS AND DOES LEVEL OF IGE GO DOWN ONCE THE SAID SUFFERINGS GET SUBSIDED? -------ASHOK DATTA
My daugther is having similar problems. She has had severe allergies since birth. She had 13,000 ige last test and this one is 40,000. We have been talking to a dr. about treatment with xolair but they don't believe that it will help with such a high ige. They are sending us to another dr. in new orleans to see if he can help. If you find a dr. or hospital that specializes in this or can help in anyway would you please let me know? Thank you so much!
I have ige in the 40,000 range and went on xolair for almost a year. The process is extremely brudensome requiring visits to the doctor every two weeks to get three shots, which had $50 co-pays. For me the results were minimal if anything, so I went off of it. My docotor who prescribed it has another patient who has ige in the 30,000 range had success on it though.
I just wanted to add that some drs have succesfully gotten children under the age of 12 on Xolair with great results. My allergist is one of them with a patient around 9 years of age. See if your doctors will do research about getting younger kids on the medicine. If not maybe they would refer you to a more persistent dr. I started it in February and have been able to discontinue one med for a while then I got a cold or something and had to take it again.
If you are on Xolair, be sure to ask your dr and the pharmacy shipping your medicine for co-pay assistence programs. There are several. One from Genetec (Xolair's manufacturers) and at least one foundation.
just to let you know our allergist put our son on xolair at the age of 5 every 3 weeks and we have seen amazing results. We had to fight BCBS for over a year but they pay for it. It is over $5000 each time but they pay it in full. Let me know if you would like to know more about the process we went through. (he was on every 4 weeks but his neck would start breaking out at the end of the third week and so the dr. switched him to every 3 and that works great) We also have a foundation that pays as well.
I have similar problem and in my case its just allergy.
I have atopic dermitatis with very high level of IgE (above 5000 for couple of years), and also had severe eczema, asthma and many allergies. No hyper IgE syndrome.
In my case immunity boosters and stress relief techniques (I had panic attacks because of my condition) helped a lot. My IgE level is still above 5000 but I no loger have other symptoms at least not that severe.
My daughter's ige was 47,000 the last time we checked it and we went to see a Dr. in Ohio that took her off the steroids and put her on cyclosporin which is a type of chemo for transplant patients. I'm not sure if I am going to get all the details right but I will give it a try and you can talk to a Dr. The medicine keeps her immune system from fighting her own body. They started her on it in the hospital for a few days and then sent us home. The medicine is in a liquid form that she took orally. It isn't harsh like you would think...we had to monitor her blood pressure and kidneys but that was it. She took that for about 6 weeks and has been off for about 2 months and she looks better than she has since she was a baby. She has even been asking to wear shorts in public, which she never does. I know that this is usually a good time of year for her, so we will see what happens in the spring. Good luck!
My husband has had cronic hives for the past 2 years - the only bloodwork that came back that was REALLY off was his high IgE levels - just re-checked and they are at 22,000. We have been seeing a Dr. at Mayo who has put him through 14 different medications. He's switching now to a shot - which is supposed to bring down the IgE levels depending on his level and his weight. I'm thinking it sounds that this is xolair. The multiple medications he's been on have been a trip in itself...the last one had a side effect of lukemia! (he didn't stay on that one very long..) The common thread I see in all of the posts is eczema and asthma. Do most of you have this?? I don't think my husband does... Any info is appreciated!
...also, with very high level of IgE it's normal to have severe allergy symptoms (because his immune system is practically reacting to everything) but they will go away as level of IgE drops.
High level of IgE can be a result of some sort of infection or parasite also it can be that high because of some allergen that is constantly present in his environment or food (short list of most common allergens http://en.wikipedia.org/wiki/Allergen)... Changing of environment, like going to mountains or to seaside for some time can help.
Just wanted to say that my daughter has not had to take any steroids or gotten back on the cyclosporin since before my last post...This is the WORSE time of year for her and she is still doing great...few little flare ups but nothing major. We also were informed that one of her doctors had done more allergy testing on foods and that she was allergic to more than we knew so we have taken all of those foods out of her diet. AMAZING results! Good luck to all of you!
my daughter is turning 5. She has atopic dermaitis. I first saw the signs of complete palest completion when she's was one and half years old, just prior to starting with a really bad.. case of ezcema. I don't know what triggered it, she's seen soon many specialists, from gastro, to dermatologist, to ENT, allegists, even her growth had remained the same for more than a year at just 18 pounds, which brough us to gastro to find out that she has Eosinophilic esophagitis (EE) ( a new disease). with a treament of 100% hypoallegenic liquids for 3 months straight, Then started introducing 2 fruits a month. she started in oct of 2010. and she now have gained weight. she's now about 34 pounds and still on the special liquid diet. She's gone through 3 upper endoscopy and will be going through a total of 4 per year for the full course of 2 years with this diet, The dr.'s hoping that it will help with her atopic dermatitis as well. She had 5300 IGE level and in october then in May of this year, It has gone done down to 4545. Now they are trying to combine with a new meds known to be used for donor transplant rejection prevention meds to help her with her daily struggle with ezcema. My daughter's EE has improved alot, it's the IGE levels which is still, My daughter has daily battle with ezcema every single night.
I'am soo tired of too many meds. at the same time, I'am looking to see some miracle. I'am now looking a any natural herbs of meds. Also any ideas to helping your child to sleep through the night without itching and bleeding all night. That's just how bad it is. any ideas??
I am 25 years old and had severe atopic ezcema as a child. Luckily it all went away around puberty,with a few out breaks here and there when i am stressed or overworked...
The only problem i feel now is that i have severe fatigue - My muscles hurt and are very stiff, I have headaches, brain fogginess- I feel like a 60 years old stuck in the body of a 20 year old.
I have seen several different doctors over the past 4/5 years and have checked everything - thyroid, gasto & intestines, food allergy, blood test and defficiencies etc.. All okay!! The only thing that stand out is the extremely high levels of IGE in my blood...
Any one has this problem?? And can you help make sense of it all?
My Son is 14 years old and has had severe Eczema, allergies and Asthma since he was an infant. He started Xolair injections a year ago. He know longer needs to use his nebulzer or an inhaler and his Eczema has gotton much better.
Our 18 year old is taking Zolair a fairly new Allergy treatment.
We live in Indiana & it's only done in hospital setting. You must register as out patient. He gets 3 injections one in each arm & one in stomach, he's getting highest does available because of his Ige level & goes twice a month. He started last August. You have to have asthma along w/ allergies to get the treatment. it is suppose to curee all allergies that can trigger upper respitory problems leading to Asthma attachs. He had Eczema very badly has baby child, still suffers some. Has had sinus sergery, ear tubes, tonsils, adnoids out etc.
As of todays blood work his ige level is down. Also he went through the whole winter without having to be on predizone once. Was on it 5-6 times winter before. His new pulminary results were so much better than we he started.
He's had no side affects at all to Zolair. You can go into afilactic shock anytime during coarse of treatments so must be done in hospital & you must carry an epi pen, some thing he carries 24/7 anyway.
Downside to Zolair.... with our son taking the highest dose available the perscription cost for the injections is $5,300 each time he gets them or twice a month plus the hospital outpatient cost twice a month making a years treatment $140,000. You have to jump through a lot of hoops to get insurance to cover it. Our son was a poster child for taking it. It has helped him tramendiously. We're hoping it helps as he leaves for College in the fall.
I have an 8 year old daughter who has had multiple food allergies since the age of 1 month (reacted to them through breast milk) and full body atopic dermatitis as well.
We finally just managed to get the eczema well under control by using Cetaphil restoraderm and having her attend a really clean primary school in Canada - e.g. no environmental triggers, no carpet.
She has always had a high IgE - between 7000 and 8,500. Research on AAAAI does indicate a direct relationship between high IgEs and high staph infections....and we have certainly noted that the staph is a huge trigger for the itchiness - if not the main culprit. There seemed to be less staph in Canada than in NZ....we keep it in control by washing her with chlorhexidine 4% surgical scrub every night in the bath.
Our paediatrician and immunologist do not seem concerned about her high IgE levels. I have to say although none of her food allergies have improved, immunotherapy has certainly helped her cat & dust allergies (huge improvement in 3 months...she used to always wheeze & vomit if we tried to stay overnight as guests at other peoples houses).
Are high IgE levels in themselves really an issue? I haven't seen any research that says high IgEs are directly the cause of something rather than a side effect of atopic eczema & food allergies (which they know go hand & hand - with asthma as well - the "allergic march").
I had eczema that will come back in a flash if I eat anything with yeast or corn in it. Since corn is in most processed foods AND medicines - I've had to cook everything from scratch and check all labels for types of corn like MSG, citric acid, etc...
If you are allergic to things and it's in the medicine too, believe me, the only way to get relief is to go all natural so you know exactly what's going into your body. Even toothpaste, shampoos, lotions etc, all have to be checked.
This can be a sign of an infection or a parasitic worm. I have high IGE levels but not 3000 and asthma. Who do you go to to treat that? Do you see an immunologist? Is this because I took isoprinosine?
I was living overseas and wonder if I got a worm infection or toxoplasmosis. I think you can take albenadzole for worms but what is the dosage for that?
Saw a special on TV that said just by having her son bath in water with a small amount of bleach in it, every night, his eczema has stayed in control incredibly well. Has helped so much, he reminds her of his bath if she forgets. Also, always noticed with my grandkids, that any cream they had us use, when they had us using cortizone cream and Eucerin, that the creams only work really well, when applied directly after bath or shower. Any other time was barely effectivew.