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???
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.
...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.
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.
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'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.
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!
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
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.
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.
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.
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.
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!
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!
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!
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...
I am 35. I also have high IgEs. I have eczema on my hands and a hive like rash on my neck. I have seasonal allergies. My specialist told me that high IgEs can cause damage to the thyroid?! Does anyone have any insight?
Thats wonderful to hear. I bet you are all so relieved. We are still struggling to find control. Mia is now 11 and we have been battling since the day she was born. We have tried immune surpressors which seemed to work for a short time but then the side effects damaged her eyesight. She has had all types of treatment from strong steriods to natural therapy. The doctors & specialists here in the canary islands are baffled. Mia is on a strict diet but because her body is consitantly chaning , I did think it best to have blood test and food allergy and intollerance tests done more frequently...fingers crossed for a more controlled and normal life......hope you´re daughter is still doing well
Im from Brazil, i have 19 years old. i have atopic dermatitis and high igE too.. My igE already reached the number of 149.000, but now is 121.000.. i always have researched a lot and never seen so high a number as my..
i use Ciclosporin for some years.. but i never had good results. Unfortunally here in Brazil do not have many resources and my doctors do not know more explain my illness.. Pliss i wonder if someone seen number so high like myy? this let me more calm cause i fight with this illness for so many years ... Thank you!! (and sorry for my english)
Had same symptoms and been tested for so ma,y things already. The pain when I touched my body disappeared when I stopped eating sugar. Some of the other symptoms went when I took out gluten. Still fighting with it and still have IgE of 180 with asthma and allergy reactions but without knowing more than that. If you ever find a solution please let me know
Hi! I never seen such a high number of igE. when I see your post I started crying, I'm really sorry for you. It's really hard dealing with this. My level is 74.000, a few years ago was 25.000 (i'm 21). Durring the last year my life started to fell apart, every day is more exhausting. I even drop from school and I'm trying to solve the problem with appropriate food, but there are no results. I was also on ciklosporin.. 2 times for 2 years on Sandimmun Neoral..for half a year it worked but then my allergy become like before. Now I'm on CellCept for 2 months and it doesn't work :/ I have just the side effects :/ I'm also on immunotherapy for dust from november. Everyday I take 2-3 telfast (antihistamine) and 1 atarax. I'm just waiting when my body will start to fell apart...when my kidneys will not work anymore.
I have very high IgE levels. I used to have very bad eczema, but evening primrose oil helped immensely. You can by it at any health food store. It is high in omega 6, though, so you should take it with oils high in omega 3, such as fish oil or flax oil if you are allergic to fish.
It's amazing how many different manifestations of the condition there are. Mine is similar & different to many.
I am 63 years old and have never had eczema. My current IgE is 5610 up 1,000 from two weeks ago and ten times what I had last year after an extremely serious asthma exacerbation which hospitalized me for 10 days and left me on prednisone for an additional 3 months before we could taper off.
Other than slight fatigue, my life went back to normal until a recent and much less serious exacerbation which required much less prednisone. It was after this event that I was having trouble shaking the fatigue, the chest and sinus congestion, that my doctor decided to check my Immunological profile.
Tests for parasites, fungus, etc have turned up nothing. My symptoms and congestion and peak flow are manageable. The only thing that bothers me or interferes with my life is the fatigue. My theory is that I feel so tired because my body is obviously fighting a perceived infection and this drags me down whether or not there is an infection of significant magnitude to account for it.
We are still searching for a reason for the rise and I'd like to know the "why" of the matter, but my main concern is getting my energy back before my grandson comes to visit.
how long do allergy shots take to work? is there a way to do them aggressively? I've heard that you have to do them 3-5 years? my doctor is terrible and waited 3 years to start me on the shots even though I have asthma- my cheeks break out in hives.
I'm so exahusted and crippled from sleep breathing problems and want to try xolair.
I was born with eczema, and live with it everyday. Each and everyday I have an average IgE levels of 10k-15k. Life isn't easy with an evtremely high IgE but im better than i will ever be. I was told that I would grow out of most of my ezcema and I have. Years ago , while I was in grade school I had an IgE level of 118,388.3 which is above and beyond Hyper IgE levels. My parents were told I would most likely die from a deadly lung eating disease, but! I didnt. Yay! I have also taken the Xolair injections for 6 months before i had a horrible allergic reaction to it. I was on 3 injection every 2 weeks then suddenly my body decides to react to the drug.And ive been on cyclosporine* for some time but didnt want to damage my live or kidneys, so that treatment was stopped. To everyone else that has ezcema... just relize it could be worse. At least we have a disease that is treatable.
My allergist said I could get my shots twice a week to expedite getting to maintenance. That and going regularly will get you to maintenance quicker, but you and your doctor need to discuss what is best for you. If you don't like your doctor, you may want to get a second opinion. I see an allergist (for my allergy shots), but my internist referred me to a pulmonologist (who is great) for a second opinion regarding my asthma. I hope you find relief. My heart goes out to you as I have had asthma since age two and have suffered a lot, but now my asthma and allergies are pretty well controlled with allergy shots and the right medications.
My son, who is 7 years old, also has high Ige level which was 14000 2years back and has come down to 3500 in last report, i have not been giving any medication , but just put him on aloe vera products, his bathing gel, creams, gel to drink, tablet to eat is of aloe vera, company forever. Seems it is helping in cleaning his body. Try it out.
No, you're not the only one. I have fungus called aspergillus in the lungs (a little less at the moment due to recent vacuuming-service!) and have similar IGE levels to yours (about 2000 to 3000). Chronic symptoms of tiredness / headache, similar to what I imagine Chronic Fatigue Syndrome must be like. Am on a dairy and wheat free diet, and consume almost no sugar (none at all directly, and my wife, who is a medical laboratory scientist and far more knowledgeable about such things, protects me against sugars in other foods). Aspergillus, I'm told, is common as dust; so it's not that I have it and others don't, but that some of us react to it, while others don't.
>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.
Well, I sympathise. But imagine what that feels like for a person who *is* 60. I'm 57 and like yourself have high IGE levels - though nowhere near as high as some of the figures I've seen on this forum, mine are in the 2000 to 3000 range. But the "brain fogginess" (fine description) I know well, along with the "severe fatigue". It's these symptoms which prompted me to do the search which brought me to this forum. Best wishes to you, hope you're doing OK.
My daughter is 2 and she is taking Xolair for severe eczema and high IgE levels. It seems to be helping a lot. It was either that or oral steroids long term and this was the lesser of the two evils. We haven't seen any negative side effects yet and she has been on it for 3 months
I am 54 and have had allergies all my life and non-problematic asthma. No eczema. Had been a smoker but quit at 24. In the last 10 years, allergy tests identified IgE in the 100-300 range. Then 5 years ago, I developed serious breathing difficulties with my asthma and ended up in the hospital about every 6 months and on prednisone and antibiotics about every other month for about 3 years. I was treated with QVAR inhaler and Flonase nose spray and Symbicort. Further testing showed my IgE had zoomed to 38,000. Went through the parasite testing and CA tests, all negative. Physician put me on Singular and the IgE went down. May have just been a matter of timing, not clear if Singular is of primary relevance. Was still cycling with periods of breathing problems, prednisone and antibiotics. We added in Spiriva last year though I do not have COPD, and my asthma has come under control. My energy isn’t great, but not bad. The Asthma is always just below the surface if I exert myself much, but not to the extent of needing neither prednisone nor hospitalization. I consider my situation to still be in flux, worried the other shoe will fall, but am doing okay now and keep my fingers crossed.
I am 14 years old, and my IgE levels are currently at 80,000. Xolair does not seem to be working for me, and I have to use my nebulizer about 5 times a day. My doctors had found out I had a high IgE levels ever since I was 7. When I was seven, they were only 20,000. Now they are 80,000. I also now have chronic bronchitis that I can't get rid of and I'm always tired and miserable :( I know that Xolair works for some individuals, but apparently its not working very well for me. I really hope it works for you, though. Don't fool around with this condition. It can be very serious. During those 7 years, I have been an inpatient in my hospital constantly and I have lost count for how many times I have been in the ICU at my hospital. IgE levels are not "simple allergens" when your levels reach this high. I have gotten many, severe infections (including meningitis a couple of times). I sometimes have to stay in the hospital for 2 weeks or more before I am better. If you do not get this treated, you will certainly not be able to enjoy things and your levels will keep on getting higher and higher, like mine are. Good Luck and, I hope you feel better soon :D
I am 69. Weeks after birth I would scratch my body into a bloody ball. At 41 my IgE level was slightly over 52000. I have atopic derm., A bad asthmatic until Advair. Used that for 4 years and not for 10 years now... no Asthma to speak of. The atopic derm is getting better as I age and my immunity system weakens with each year. I have been able to control the atopic derm by showering enough to wet the skin twice a day then while the skin is still wet ... I mix a cortisone cream with vasoline ... about 20/80 on my hands then spread over the allowed part of my body while still moist from the shower . This works to control my skin mostly. Also supplement this with cortisone less than four 20 mg per month...Taken as needed but never back to back days. Growing up I was given large amounts of cortisone which kept me alive and have suffered the side effects as cataracts ... have learned to manage my skin over the last 30 years.
I have lived long enough that my immune system is weakening. For us... Age is our friend.
Im 27 and it sounds like we are having the same trouble, your muscle and joints pains(if u have them) are probably caused by your medication, I was on 300mg of ciclosporin every day, which caused me mialga, (i think its called), across my chest, and walking up stairs in the morning would tire me out all day.
My doctors switched me over to Methotrexate, which ii take once a week and now i can do a lot more, although my skin is stll terrible and my IGe is over 5000,
Do u have other problems aswell, arthritis? hayfever? conjunctivitis and asthma,?
Your the only person my age that i can find which has what i have? Its mainly kids
I'm a 24 year old male and have been having severe skin problems for almost 3 years now. It started up as an unusual skin rash and has progressively gotten worse. My skin has become extremely sensitive. For example, scratch at a pimple on my face and it swells up like a hive, scratch my skin if it itches, and it starts to welt and get red. I also have random swells of itchy red skin, but isn't dry like eczema tends to be. Also if I lift weights or something, my hands start to swell and blood flow starts to constrict. I've been to 4 different types of doctors and had many blood tests done. I also have a high IGE level, but all organs/bodily functions/levels are fine. I have constant allergies and sinus congestion is a daily thing for me. I've switch detergents, soaps, shampoos, foods, you name it. It has taken a tole on my social life as well as mentally. Can't play football with the guys because I'll break out in severe redness and swelling, haven't had a girlfriend since this whole thing started, and I have started to become socially awkward due to my self consciousness of my issue. Hoping to find some answers if possible. I just can't believe that doctors can't seem to find whats wrong :/.
I tend to get pain in my joints and skin redness randomly poos up of my neck, face, chest, arms, behind the ears, etc. High IGE levels, but everything else is normally according to my doctor. Swelling of the skin if skin is under pressure(ex:lifting weights, or anything that needs a tight grip that has alot of weight), This ***** cause doctors just dont get it. And doctors visits and meds that they're not even sure will work aren't cheap. UghhhhI'm 24! This is nuts!
I tend to get pain in my joints and skin redness randomly poos up of my neck, face, chest, arms, behind the ears, etc. High IGE levels, but everything else is normally according to my doctor. Swelling of the skin if skin is under pressure(ex:lifting weights, or anything that needs a tight grip that has alot of weight), This ***** cause doctors just dont get it. And doctors visits and meds that they're not even sure will work aren't cheap. UghhhhI'm 24! This is nuts!
Your case sounds very similar to mine. I have no answers and I constantly search the internet for help. Dr.s are stumped. I have reoccurant episodes of joint pain, headaches, fatigue, fogginess, body rash that starts on trunk and spreads outward, occaisional asthma - and new symptom Central Serrous Retinopathy.
Have you considered a link between symptoms and a yeast problem, maybe candida related?
I grew up with atopic eczema, seemingly outgrew it by puberty for the most part, symptoms have been mild and under control throughout college until recently affecting me again at age 25. After coming off birth control and a particularly unhealthy back to back weekends, i broke out in a body rash, eczema on arms, seborrheic dermatitis on face, and a suspected nasty staph infection to make things worse.
Aside from not too much help from doctors (IGE was 800+, showed no food allergens, just common environmental I have always known), this is what has helped me the most:
-antifungal, antibiotic diet - as many nutrient rich greens, less fruits if you suspect infection to start.. of course eliminate potential food allergies and even inflammatories if you can to start
-supplements to help with above, esp. if nutrition is lacking. you can take greens supplements, antifungals as garlic, coconut oil, oregano oil, probiotics, vitamin d to reduce immune overreaction, healthy amounts of sunlight... these have all helped me the most in my opinion though of course what works for you may be different, and I can't give you medical advice. A multivitamin and b complex, omega 3 and 6's are all good advice as well.
-stress reduction - remember that you will recover from this with patience
- for itchiness and as an alternative to bleach baths, a diluted apple cider vinegar has been very effective in reducing itching and stoping the spread of rash, esp. when staph is suspected. be careful not to over do it and burn the skin though.
hope i've been of some help, best wishes to all of your in getting to the root of your overactive E
How do were you diagnosed with ABPA? I had a mild skin test reaction to it. My IGE is 2,500. I have moderate/severe asthma and outbreaks of eczema. My blood test was positive for aspergillus but not very high. Next step is to biopsy my lung. Just wondering what your experience was. I appreciate any info you can give me.
I am 50. I've had hay fever my whole life and developed eczema in my late 40s after a long day of yard work. The eczema lasted 4 years until I discovered that atopic individuals with eczema are also likely to have food allergies. (Check out the many excellent articles on atopic dermatitis on DermnetNZ.org.) This is in addition to the eczema and hay fever. I got an IgG ELISA blood test showing sensitivity to dairy, egg, and wheat, stopped eating those things (also stopped eating sugar and GMOs for my general health), and not only did my eczema go away, but my allergic rhinitis got much better as well. If you don't want to be on steroids and antihistamines your entire life, you should really look into food as a cause of your health issues. I strongly recommend the book Hidden Food Allergies -- available through Amazon. Best of luck.
i am the patient of asthama since i was 7 years old and now im 29years old, i always had skin problems with me, last year my doctor adviced me to get tested the IgE, so my IgE levels were about 4000, from now onword i get myself tested after every 30 days and my IgE levels are between 3500-5000, i am constantly having the anti allergy tablts but no result, my doctor dont want me to take Xolair, can any1 tell me what should i do????
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.?
My husband has been fighting a similar battle chronic autoimmune urticaria they are calling it with a delayed pressure urticaria component. We have done everything from allergra to predisone to cellcept to cyclosporine (leukemia drug). We are now looking into Mayo clinic and xolair. We are drawing Ige levels tomorrow morning- nothing else has come up. Did you have any luck with xolair? I see your post was in 2011 very curious where you and your husband are at this point-
Hi, all, this board seems to be going on for ages. There was one girl there who said she felt stiff and brain fogged and dizzy....exactly how I'm feeling. My ige level is 1536 and weirdly enough my sisters level was high too... Odd? But we both noticed breathing issues, mine were more slightl then my sisters. I also had my vitamins checked. And b12 was a little low. I'm hoping if I take some b complex it will help with everything. ;) I hate going to docs cos they say il my tests are fine but I feel like I've run a marathon some days when I wake up.
Anyone have any luck using cellcept? We have been battling eczema with our son for 9 years and recently it has gotten much worse. His IgE levels are 21,000+ . He has abscesses over his body and nothing besides atarax is helping. He can't continue to sleep through life and miss school. No food allergies and celiac panel was negative. Allergies to dust dogs, horses, and grass. History of repeated sinusitis and asthma. Hospitalized once for pneumonia. Any help would be greatly appreciated.
Have you been checked for tick born infections, such as Lyme disease, bartonella or babesia? I have all of these and you have some of the symptoms. Ticks can be as small as a poppy seed and less than half of those bitten get the EM rash at the time of the bite. Or if they do some do not notice or mistake for a spider bite etc. infectious disease doctors can test for this however I recommend a Lyme literate doctor because they specialize in tick born infections and are the experts of tick born infections. It is their focus and passion. Here is a link to ILADS. http://www.ilads.org They can help you find a Lyme Literate Doctor in your area and they have many resources on their site. Good luck, God Bless and prayers for healing!
My 6 year old son is being recommended for Xolair. Of course,we worry about side effects and the FDA says approves over 12. But I also think it's just FDA red tape and it will eventually be available to under 12. His eczema is year round and very severe covering his whole body. I wanted to see what your experience has been since you have a similar age child.
I am 24 years old, I have problem with high level of total Ige. First doctors thought that I had Hyper Ige syndrome (Job syndrome), because I had pneumonia when I was 3 months 8 and 12 years old. I had EBV virus (14 years old) and pneumoniae chlamydia (15 and 19 years old). After 19 years old (3 month from treatament pneumoniae chlamydia) I becoming have a many problems with my health. I was in hospital, with suspected of acute pancreatidis, but this diagnose wasn´t suspected. I had problems with immunity. But now, doctors know that I have alergie, asthma, GERD, atopy, migraine and celiac disease Marsh 3a. I have diet and Asmanex and total Ige dropped from 1993 to 953 for the year. My eczema is much better than before.Is there anyone who has similar symptoms? Do you think it is possible link between celiac disease and high level of Ige? I am very sorry for my elementary English, I can´t speak English very well.
Try changing his diet it is a lot cheaper and SAFER!, my doctor recommended cellcept but I declined after finding out about it's side effects. I'm now 36 and as a child I looked like a monster because of my hives and eczema, had a HORRIBLE childhood, it was quite sad how people treated me but anyway that is life. I changed my diet and my skin has improved 70%, but I still get hive/eczema flare up in the spring. As for the diet he is most likely allergic to wheat, soy, eggs, shellfish, nuts, dust mites, and likely certain trees like birch, oak and others that their name escapes me. I know trees are hard to avoid but food you have control over so start with that.
In 09' I was intubated and in a coma for 4 days. Diagnosed with aspergilosis. My o2 sats were 89% and I was intubated so I can't even imagine the gentleman who had an o2 sat of 55%! I had my IGE levels drawn in 2010 I think and they 13,374. This was the highest ige that the allergy clinic has ever seen and I was determined untreatable because they were afraid shots would cause anifilactic shock. I have not had my ige levels checked since. Whats the point? They wont treat my allergies so they are obviously going up. I am a severe asthmatic. Have been on prednisone for 3 years straight. My eczema has gotten so bad that I have contemplated suicide at times. The constant itching and pain is unbearable. It feels like I am being pinched by the claws of a scorpion ten times a minute in different areas of my body. I have giant HOLES all over my arms and legs as well as the generalized, weeping rash everywhere else from my ears to my toes and everywhere in between. Between my asthma and eczema, I can't hold a job for more than a couple months at a time. I am a nurse and am unable to work as a nurse any longer due to the risk of infection from all of the open areas on my body. I was on methotrexate (chemo drug) for a bit but I had a reverse effect and wound up in a mental hospital from it so be aware of that reverse effect before starting this med. I have such a horrible quality of life. I can't go outside during the day because I can't be exposed to the sunlight. Like at all. Not for 2 minutes. I can't really go to public places because I have reactions to the cleaning chemicals used by the public. ESPECIALLY hospitals. When I DO go to the ER I break out in hives before being seen. I had to sell my horses because of my reactions to them but I WILL NOT give up my dogs. I have poodles and shitzus and they are considered hypoallergenic but I beg to differ. I am allergic to most antibiotics and other drugs including doxepin which ***** because its a helpful medication in eczema. I take 100 mg of hydroxyzine a day with very little relief. I can not use ANY soap during showers. All lotions make eczema symptoms worse. I suffer from severe anxiety which exacerbates asthma and eczema which exacerbate the anxiety. As a teenager I was accused by police officers of being a heroine addict because they were uneducated and thought my eczema were track marks from shooting up.As a child in elementary and middle school I came up with a story that I had been burned in the past so they wouldn't make fun of my different skin. A terrible story, I know, but it worked. Even nurses don't seem to educate themselves on the signs and symptoms of eczema. Sometimes I believe I am THE ONLY person in the whole world that lives like this.
I have been fighting high IGE ( undetected for 7 years ) caused from a parasitic infestation ( undiagnosed for 4 years ) ((toxocariasis )). My IGE was at 74,000 at one point. I have had asthma more most of my life but was under control until this. Atopic dermatitis has been what I am being treated for right now. Started with methotrexate which "burned" the inside of my mouth. It took months before I could intake anything slightly acidic. Was switched to cylosporin (300mg / day), 10 mg of prednisone a day which helped a little. I was put on the highest dosage of IVIG ( every 3 weeks ) for a year and that helped a bit. As time went on, it helped less and less. I have just finished the testing for xolair. My IGE dropped to 24,000 just before I stopped the IVIG treatments. My last IGE results were 299 ( still don't believe it ), but I can not be a candidate for xolair if IGE is over 300. Over the past 7 years I have had 2 heart attacks and a couple of strokes. I have lost proper function of my legs and hands, I now walk with a cane for balance or a walker if going any distance. Our lovely government has denied me a pension twice since my "condition" of atopic dermatitis does not qualify me. They can't see past that part of my application. Hoping xolair helps
Xolair is provided through a specialty pharmacy and there is co-pay assistance. Talk to your Dr's staff. Hopefully they have someone who specifically manages the Xolair patients. Good luck because Xolair is wonderful! It is an injectable so you will not be able to get it at a regular pharmacy.
I suffer from similar symptoms and could not sleep more than an hour or 2 without waking from the itch. However with experimentation I have found that topically I use tea tree oil and when it dries I put zinc oxide all over it. It does take away the itch. Orally I take Doxepin, singulair and zantac. Zantac hits the H2 receptor which none of the other antihistamines do. The doxepin makes me tired but when I am itching, its a small price to pay. so I do singulair and zantac in the morning and zantac and Doxepin at night. I hope this helps
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