Very High IGE Levels

My son (14) has a IGE level of 33,000 - he has severe eczema, asthma and many allergies.  We did have a specialist examine him for Hyper IGE (Jobs syndrome), which he does not have.  Is there any other disease that would carry such a high IGE level, or can this just be severe allergies???  

[AllergicOne]

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.

[AllergicOne]

...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.

[allialfaro]

My 3 year old son has severe eczema with an IgE level of 70,000.  We are seeing a new allergist/immunologist in Dallas, and he mentioned a treatment called Xolair, which is an IgE inhibitor; unfortunately, it is only approved for patients 12 years and older.  It is an injection which is given either every 2 weeks or every 4 weeks.  It has been proven to reduce the incidents of asthma exacerbations as well as decrease the eczema flares.  You might speak to your doctor about it.

[Dr_Aparna]

Hi,
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.
ref:
http://en.wikipedia.org/wiki/IgE
Hope you find this information helpful.

[RAJU1971]

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

[somo]

I Never like Life

[heatherhalbrook]

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!

[x1dsmit]

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.

[bsmsl]

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.

Good luck.  

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.

[HOLLYCAKE]

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.

[myfriendwilbur]

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.

[HeatherCHalbrook]

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!

[roxane777]

My husband has had cronic (chronic) 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!

[Fungusqueen]

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

[HeatherCHalbrook]

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!

[concernstayathomemom]

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 (eczema).  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 (eczema).  My daughter's EE has improved alot, it's the IGE levels which is still, My daughter has daily battle with ezcema (eczema) 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??

[tarataghadous]

Hello,

I am 25 years old and had severe atopic ezcema (eczema) 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?

[lskeller]

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.

[one2growon]

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 (surgery), 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.

[MomOfItchyKid]

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").

[CornAllergies]

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.
http://www.cornallergysymptoms.com

[ill13632]

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?

[ill13632]

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?

[Nannyfinn]

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.

[dillu117]

I am dilawar have a allergy level of 1110
i treated with Hakeem in Pakistan Karachi my allergy level down in 1 month to 908 and next month 650 . it is only 2 months result.

my allergy level down from 1110 to 650 in only two months.

This hakeem is medicine is very very Good and no Side effects .

i am from karachi if u want to down your allergy level contact me on this number i am from Karachi Pakistan 03452401897

[Lynx1113]

I am 38 years old and have battle allergies my life but began get huge hives a few years ago. After many allergy tests and rounds of prednizone, it was my allergy doctor who realized that I probable had high Ige levels....and blood work proved him right. I began my first series of Xolair with very high hopes. It worked great...but I rebound higher after each series. Normal levels are under 150...I started off with just slightly higher at 183. This was a couple years ago. I finished up my 4th series of shots (each series being 1 shot a month for 6 months) and my last blood work came back at 471...three times the normal high. This may not sound like high levels compared to some but I have learned that every body has a different tolerance. I am now getting the large hives again and looks like another round of Xolair is in my future.....once I can get my new insurance to pay for it. It IS expensive. It costs me $4000 a month and I have to go to the hospital to get the injection. I also have all the rare side effects to the medication.....severe ear pain, insomnia, exhaustion, irritability.....I never react the same each time. Xolair does work for me...no allergy medication or inhalers are needed while on the injection (which is great since I am allergic to Zyrtec....it gives me sever depression so I am afraid to take anything) and it has 'cured' me of COPD. If any knows of another therapy for high Ige levels...please share.

[jw531]

Hi, this is to the 25 yr old with high IGE levels and excessive fatigue. You don't mention asthma or inhalers or are you still on high-level steroid creams for your skin? If you are or have been on steroids (usually high-doses from what I understand...) ask if your cortisol levels have been checked.

If you want to google it look for low cortisol levels or adrenal suppression.

Good luck.

[oakleychic33]

Do you have ABPA?  My doctor thinks I do but my IgG levels do not qualify for it.  My IgE's are 5,052.  I have tons of food allergies and while we wait for more results I am going back on my food allergy diet (no wheat, corn, milk, nuts, fish, soy, eggs).  I am hoping after a month it will cut my IgE's in half.  We will see.  Good luck!

[matanush]

Hey!
I am 23 years old male.
I was healthy all my life, for 21 years until I went to study in Hungary.
Probably because of pressure in studying medicine abroad, girlfriend problems and away from home I got onset of many allergies, which Alternaria was between them at extremely hight level of 6, <100, ( grass mixture, level 2 and wheat flour as well level 2). I ate wheat flour all my life without any problems. But when I got the hay fever symptoms in the spring, and then the enormous fatigue, which didn't pass a dr' who test my blood for this allergies suggested immunotherapy. I went for 2 others Professors who said I whould wait with immunotherapy and see if it will pass. After 6 months of suffering, I decided to go back to Israel. Antihistamins and corticosteroid didn't help me, as well as antibiotics.. My head hearts, and I feel tired all the time. Sometimes I feel better. I had vertigo twice and now one ear is ringing sometimes.. What should I do now? Please try to help me! Thanks a lot!

[freakingfantabulous]

WOW everyone! Amazing stories! I hope I can help someone out there, especially the lady with the 5 year old little girl.
My daughter is 9. She has severe eczema, asthma, ABPA and EE. She has used every freaking medicine in the book, tried every treatment. Currently, her future looks somewhat brighter since she will be starting the Xolair soon.

I am surprised no one has mentioned IVIG treatments, these are also proven to help Eczeme amazingly! Please, anyone have questions email me, i would love to help!

[smomo52]

Did you have the Ghardisil shots? Those are all side effects of a poor reaction to Ghardisil vaccination. Hope you feel better.

[hatingillness]

did you ever hear anythign more about this...i'm 26 and am having the same problems...dizziness (with numerous falls), extreme fatigue, my body hurts so bad some days for my 3 year old son to even touch me, if i lay certain ways from the middle of my lower back down i feel like i'm going numb....they said i had mono but now those levels are down, the only that is high is my Ige's as well...i do have asthma and seasonal allergies usually a week in the spring and a week in the fall, this is the best year i've had in prob 10 with my allergies they have barely bothered me but my levels are in the 3000's...just curious, they sent me to infectious disease specialist and i guess my next specialist is a muscular one...