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Chronic sufferers of High IGE levels Please Read....
Hi, this is my first post in a medical community before and I hope that my life experience, struggles, and determination will help other sufferers of this disease in understanding and dealing with this painful condition.
Before I start I am not a medical professional, most of this information I will tell you has been gathered from reading medical/immunology books, medical articles, other chronic sufferers' articles, and my own personal experience.
Here's a little info about me:
My name is Alan and I am 25 yrs old... I have a chronic skin condition since birth which was originally diaganosed as eczema. Later around when I was 20 it was diagnose as Atopic dermatitis type A (I do not have Job Syndrome). This condition originally only affected my arms, chest, stomach, legs, neck and back. Now it affects my whole body from head to toe. Doctors have told me most people eventually grow out of this skin condition when they get older, I guess I was one of those unlucky few. This condition has prevented me from working long hours as I got older and I currently only can work 16 hours a week without being hugely effected. My food allergies include nuts, strawberries, pineapples, tomatoes, shellfish, and green beans (wheat also but its very mild). My environment alleriges are grassweeds and oak trees. From when I was 20-25 I had my IGE levels checked and were found to go from 8,000 to 17,000 (the levels probably reach higher when I was a child during my extreme flares. I've visited countless clinics throughout Massachusetts (including Brigham in Boston) meeting with dermatologists, allergists, and immunologist specialists. I have tried steroids creams, allergy shots (took them for 2 years), UV treatment, and immune suppressents.
Here's a little information of my atopic dermatitis type A condition:
This condition effects my body from head to toe and people who happen to meet/know people with this condition please realize it can be a very painful experience. I am in a constant state of itching at all times every single day of my life. Flare ups tend to leave my skin red and very elevated (this is caused by the mast cells becoming overly sensitive and releasing massive amounts of histamine). In flared regions I tend to have a clear liquid oozing out of the region with a very distinctive smell (doctors have told me this is the byproduct of the mast cells aka histamine). Everytime I flare up it usually takes 3-5 days for my flared sections to dry, then crack open and scab on me (this is with using steroid creams). Without medical treatment I have gone with my skin in a flare state almost up to a month before it healed on me. During this flared state the skin becomes very sensitive to touch and can be very uncomfortable with clothing on top (Most of my if not all of my sheets and clothing are very soft, smooth and breatheable). On top of all this I also have had to deal with constant infections due to the skin opening or because of the histamine build up in the skin.
Here is some information of treatments I have researched and tried (I will talk of advantages and disadvantages):
Steroid Creams- I have been using this my whole life even though I don't like it (from west court, to hydrocortisone, to triamnicolone.. and who knows how many other creams). When I was younger the doctors would just constantly fill out prescriptions of steroid creams all the time without a care in the world. As a result the skin behind my kneecaps, in front of my elbows, on my inner thighs, and on my neck have shown signs of thinning in my later years (this effect seems to be permanent since even til this day the skin is thinned). Steroid creams block the inhibitors of the histamine which helps reduce the amount release on to the skin. While this tends to be the most basic effective direction to recovering from a flare up it also has it's dangers. Please remember that whatever you put on your skin is eventually absorbed and can go into your blood effecting your organs (liver in particular). Today I use steroid creams as little as I can even if Im constantly flared for months on end. I try not to apply it to my skin everyday for if you do not only is it dangerous, but it eventually becomes ineffective. If you wait a day or two then try re-appyling the cream again it will have regain it's effectiveness in controlling the flare up.
Allergy Shots: The idea of this is to inject you with small proportions of the allergen to help your immune system build an immunity to the allergen. For two years I use to go to my allergist to receive these (at first it was weekly, then became monthly, then became every few months). I have had some minimal good results from this in reducing my response to certain environmental allergies (not food). While it does not completely stop your reaction to your allergen it does help and I recommend this for children when growing up. There isn't any serious disadvantages I've experienced with this except for having to go to the allergist all the time when I was younger.
UV Treatment: UV treatment uses ultra-violet rays to bombard your body to help dry out the histamine in your skin. I tried UV treatment for about a half a year at first going a couple times a week or once a week. While it was working at first and gave me a nice tan my treatments tended to leave my skin feeling very dry after I received it. Also, I find out that the treatments tend to only help your body dry out the histamine that's in your skin for that point in time. Histamine tended to buildup under my skin the next day after the treatment leaving me with itchy skin from the histamine and dry skin. In the end I gave up UV treatment after one bad experience. I came in one day with my skin extremely flared hoping the UV could help ease my pain. As a result the normal treatment time ended up affecting my body more then it should have and left me with 3rd degree burns on top of my flare from head to toe. I was hospitalize for a week in Boston recovering from that. Never again did I touch the UV. (Just for anyone else's curiousity I discovered that the flared regions of my body tended to appear a very dark purple under the UV light),
Immune Suppressent Drugs: I've had experience with prednisone and cyclosporin and read about Xolair. I will explain all of them in due time. During my hospitalization the doctors prescribed me with prednisone and it almost seem to work like magic relieving my skin. The skin began to dry out and the itching was completely gone! (I was amazed by this, first time in 20 years I did not feel itchy at all.. I actually almost cried because of it). Later I found out my dermatologist at Brigham wasn't very happy with this. He had told me he did not want me on the prednisone because users tend to get addicted to it because it actually completely stops the itching and also is very harmful to my health. So, after he suggested I try out this other drug called cyclosporin which is less dangerous to my health, but I would have deal with the itching once again. For your information these two drugs are both very harmful because they not only weaken your immune system, but they also can cause liver failure. Over the next few weeks he began to get off me off the prednisone drug and eventually onto the cyclosporin. Doctors have prescribed me prednisone in the past to me and it always worked very effectively in controlling extreme flare ups... the only problem is it is very dangeous long term. Now to explain my experience with cyclosporin. At first the low dosage helped me a little bit, but I found when I tried working long hours again my skin would once again flare. Eventually my dermatologist kept upping the dose until it was maxed out for my body weight. I found out because of this I could almost work near 40 hours having only mild flares. So, for 2 1/2 years this became my situation averaging around 300-400mg of cyclosporin a day (please wait for next post)
Before I start I am not a medical professional, most of this information I will tell you has been gathered from reading medical/immunology books, medical articles, other chronic sufferers' articles, and my own personal experience.
Here's a little info about me:
My name is Alan and I am 25 yrs old... I have a chronic skin condition since birth which was originally diaganosed as eczema. Later around when I was 20 it was diagnose as Atopic dermatitis type A (I do not have Job Syndrome). This condition originally only affected my arms, chest, stomach, legs, neck and back. Now it affects my whole body from head to toe. Doctors have told me most people eventually grow out of this skin condition when they get older, I guess I was one of those unlucky few. This condition has prevented me from working long hours as I got older and I currently only can work 16 hours a week without being hugely effected. My food allergies include nuts, strawberries, pineapples, tomatoes, shellfish, and green beans (wheat also but its very mild). My environment alleriges are grassweeds and oak trees. From when I was 20-25 I had my IGE levels checked and were found to go from 8,000 to 17,000 (the levels probably reach higher when I was a child during my extreme flares. I've visited countless clinics throughout Massachusetts (including Brigham in Boston) meeting with dermatologists, allergists, and immunologist specialists. I have tried steroids creams, allergy shots (took them for 2 years), UV treatment, and immune suppressents.
Here's a little information of my atopic dermatitis type A condition:
This condition effects my body from head to toe and people who happen to meet/know people with this condition please realize it can be a very painful experience. I am in a constant state of itching at all times every single day of my life. Flare ups tend to leave my skin red and very elevated (this is caused by the mast cells becoming overly sensitive and releasing massive amounts of histamine). In flared regions I tend to have a clear liquid oozing out of the region with a very distinctive smell (doctors have told me this is the byproduct of the mast cells aka histamine). Everytime I flare up it usually takes 3-5 days for my flared sections to dry, then crack open and scab on me (this is with using steroid creams). Without medical treatment I have gone with my skin in a flare state almost up to a month before it healed on me. During this flared state the skin becomes very sensitive to touch and can be very uncomfortable with clothing on top (Most of my if not all of my sheets and clothing are very soft, smooth and breatheable). On top of all this I also have had to deal with constant infections due to the skin opening or because of the histamine build up in the skin.
Here is some information of treatments I have researched and tried (I will talk of advantages and disadvantages):
Steroid Creams- I have been using this my whole life even though I don't like it (from west court, to hydrocortisone, to triamnicolone.. and who knows how many other creams). When I was younger the doctors would just constantly fill out prescriptions of steroid creams all the time without a care in the world. As a result the skin behind my kneecaps, in front of my elbows, on my inner thighs, and on my neck have shown signs of thinning in my later years (this effect seems to be permanent since even til this day the skin is thinned). Steroid creams block the inhibitors of the histamine which helps reduce the amount release on to the skin. While this tends to be the most basic effective direction to recovering from a flare up it also has it's dangers. Please remember that whatever you put on your skin is eventually absorbed and can go into your blood effecting your organs (liver in particular). Today I use steroid creams as little as I can even if Im constantly flared for months on end. I try not to apply it to my skin everyday for if you do not only is it dangerous, but it eventually becomes ineffective. If you wait a day or two then try re-appyling the cream again it will have regain it's effectiveness in controlling the flare up.
Allergy Shots: The idea of this is to inject you with small proportions of the allergen to help your immune system build an immunity to the allergen. For two years I use to go to my allergist to receive these (at first it was weekly, then became monthly, then became every few months). I have had some minimal good results from this in reducing my response to certain environmental allergies (not food). While it does not completely stop your reaction to your allergen it does help and I recommend this for children when growing up. There isn't any serious disadvantages I've experienced with this except for having to go to the allergist all the time when I was younger.
UV Treatment: UV treatment uses ultra-violet rays to bombard your body to help dry out the histamine in your skin. I tried UV treatment for about a half a year at first going a couple times a week or once a week. While it was working at first and gave me a nice tan my treatments tended to leave my skin feeling very dry after I received it. Also, I find out that the treatments tend to only help your body dry out the histamine that's in your skin for that point in time. Histamine tended to buildup under my skin the next day after the treatment leaving me with itchy skin from the histamine and dry skin. In the end I gave up UV treatment after one bad experience. I came in one day with my skin extremely flared hoping the UV could help ease my pain. As a result the normal treatment time ended up affecting my body more then it should have and left me with 3rd degree burns on top of my flare from head to toe. I was hospitalize for a week in Boston recovering from that. Never again did I touch the UV. (Just for anyone else's curiousity I discovered that the flared regions of my body tended to appear a very dark purple under the UV light),
Immune Suppressent Drugs: I've had experience with prednisone and cyclosporin and read about Xolair. I will explain all of them in due time. During my hospitalization the doctors prescribed me with prednisone and it almost seem to work like magic relieving my skin. The skin began to dry out and the itching was completely gone! (I was amazed by this, first time in 20 years I did not feel itchy at all.. I actually almost cried because of it). Later I found out my dermatologist at Brigham wasn't very happy with this. He had told me he did not want me on the prednisone because users tend to get addicted to it because it actually completely stops the itching and also is very harmful to my health. So, after he suggested I try out this other drug called cyclosporin which is less dangerous to my health, but I would have deal with the itching once again. For your information these two drugs are both very harmful because they not only weaken your immune system, but they also can cause liver failure. Over the next few weeks he began to get off me off the prednisone drug and eventually onto the cyclosporin. Doctors have prescribed me prednisone in the past to me and it always worked very effectively in controlling extreme flare ups... the only problem is it is very dangeous long term. Now to explain my experience with cyclosporin. At first the low dosage helped me a little bit, but I found when I tried working long hours again my skin would once again flare. Eventually my dermatologist kept upping the dose until it was maxed out for my body weight. I found out because of this I could almost work near 40 hours having only mild flares. So, for 2 1/2 years this became my situation averaging around 300-400mg of cyclosporin a day (please wait for next post)
We are on the same boat.Although your case may be worse but I can fully understand your pain. I live in Iran and I always think if I lived in developed countries I would have a better chance for getting rid of this painfull disease,but it appears that we should still wait and hope for science to do something .FOr the time being the best way is to avoid allergens and care more not to evoke your immune system.These measures are safe ,but drugs have severe consequenses and got stomach ulcers and many other problems which are as bothering as allergy itself and will never cure .Thank you for giving your experience .I hope I can read more of your experiences .
Oh I noticed I can't give email addresses!
Ok so just try homeopathic medicines to reduce ige levels which is causing all the horrible ecxema!
Homeopathic medicine has no died effects, so you nothing to loose. After two weeks your ige level should reduce.
I wish you luck!!
Ok so just try homeopathic medicines to reduce ige levels which is causing all the horrible ecxema!
Homeopathic medicine has no died effects, so you nothing to loose. After two weeks your ige level should reduce.
I wish you luck!!
Hello
I really relate to your story. Exema is horrendous and I wish every sufferer an easier time. I had exema and really horrible dry skin. Every morning i wake up with really dry scaly skin. I hated seeing myself in the mirror. All night I would scratching and applying the elocon steroid cream.
I tried all kinds of steroids, which relieve the symptoms but are not good long term.
I tried gem stone therqphy, which again didn't really work
I tried changing my diet to all green. That dandy really work.
I tried adjusting my spinal chord positioning. It didn't work
Then I went Pakistan on holiday and met a homeopathic doctor. He took my blood test and told me the cause for my
Exema was my ige levels which were 33,000
He proceeded to give me drops, that I would take five times a day. 5 serrate drops he gave me.
I have on this treatment for 5 months and thanks to god my ige levels are now around the 4000 mark.
I still get ichy every now and then, but my skin is no longer dry, and my itchiness no where near what it was.
I'd say my recovery is about 80 per cent. Iam hoping to continue his medicines till my ige levels are normal.
I've experience no side effect, and to all exema sufferers out there I thing I have the cure!
Please email me on ***@**** and I'll gladly pass on all the information you need to have an easier life
God bless you all
I really relate to your story. Exema is horrendous and I wish every sufferer an easier time. I had exema and really horrible dry skin. Every morning i wake up with really dry scaly skin. I hated seeing myself in the mirror. All night I would scratching and applying the elocon steroid cream.
I tried all kinds of steroids, which relieve the symptoms but are not good long term.
I tried gem stone therqphy, which again didn't really work
I tried changing my diet to all green. That dandy really work.
I tried adjusting my spinal chord positioning. It didn't work
Then I went Pakistan on holiday and met a homeopathic doctor. He took my blood test and told me the cause for my
Exema was my ige levels which were 33,000
He proceeded to give me drops, that I would take five times a day. 5 serrate drops he gave me.
I have on this treatment for 5 months and thanks to god my ige levels are now around the 4000 mark.
I still get ichy every now and then, but my skin is no longer dry, and my itchiness no where near what it was.
I'd say my recovery is about 80 per cent. Iam hoping to continue his medicines till my ige levels are normal.
I've experience no side effect, and to all exema sufferers out there I thing I have the cure!
Please email me on ***@**** and I'll gladly pass on all the information you need to have an easier life
God bless you all
Over the course of those 2 1/2 years my dermatologist constantly checked my blood to make sure I was healthy. Also, as a result of being on such a high dose of cyclosporin I tended to feel very sick for 2-4 hours after taking the medicine (fever like symptoms). If I did not carefully avoid sick people I would become extremely ill and even at one point was hospitalize for 4 days because my immune system grew so weak. Infections began to appear on my legs over time and I began to take antibotics along with the cyclosporin. Worrying for my health my dermatologist suggest that we try to go for a new experimental drug called Xolair which can only be used for people with a history of asthma (which I had in the past). The only problem was that my IGE had to be below 3000 for it to be even effective, my current level was 12,000 at the time. So, as months passed I kept using cyclosporin attemptin to bring down my IGE levels. During this time I also began to research Xolair and eventually found out that Xolair had side effects of heart failure and after discussing this with my dermatologist I wisely decided not to use this. So, for 2 1/2 years my life was at a stand still using a drug that seemed to moderately control my skin and made me feel sick every single day I used it. All of this changed one day. When examining my body I found 4 lymph nodes on my body which had become very enlarged within a day... within 4 days I had 11 enlarged lymph nodes throughout my body. My dermatologist told me it wasn't that serious, but my PCP told me I needed to see a specialist immediately because being on such a high dose of immune suppressant drugs puts me in the high risk category of cancer. For your information after the 4th day of the other 7 enlarged lymph nodes appearing I decided to cut out the cyclosporin fearing that it may have caused lymphoma. Luckily in the end it wasn't cancer, but I decided to never try an immune suppressant again after weighing in my life against good skin. As a result I never touched cyclosporin or prednisone again and once again limited my hours of work. Til this day the lymph nodes appear just as large as they did 1 1/2 years ago reminding of my close call with cancer. This drug might work for some people, but there are extreme side effects and I recommend anyone to take extreme thought when deciding to use these drugs. Always ask your doctor for a sheet on the side effects of drug when or before using it, because I was never told Xolair could cause heart failure until I find out myself.
Kenalog Injections: I have read about these and heard of them. Supposely the idea is to inject your body with steroids to help reduce the histamine levels once a month. Side effects include liver failure.... so once again I prefer to stay away from them.
Currently I use steroid cream (triaminicolone.. however you spell it), a skin antibiotic (when needed) and lotions. There is no cure for high levels of IGE (unless technology allows us to change our DNA structure). There is only ways to help reduce the effects of high IGE levels. Use your own judgement, research and experiences to determine the best direction for you. My best suggestion is find the most natural way to deal with the condition for I find it to be the safest. This includes programs to help alleviate stress (exercising, meditation, music etc..) and healthy eating (daily dark green veggies and fruits are very important!) Stay away from allergic foods and environments. Make sure the sleeping area is very clean with clean sheets and free of any dust, germs or allergens. Air purifiers help take out the allergens out of the air. Humidifiers and vaporizers help keep the skin moist. Switch lotions after use for long times since your body may eventually react to it (after awhile you can originally return to using the lotion once again). Over the past year I have found out that by just staying happier makes my skin feel better. I still hope for the day in which I can be completely free of medicine, but I do realize and accept the fact this condition may follow me into my gray years. I plan to continue my research in nutrition and chemicals hoping to find a safer and more natural way to deal with this condition. I hope my experience helps encourage you and educates you in dealing with your condition or in helping someone deal with theirs.
Kenalog Injections: I have read about these and heard of them. Supposely the idea is to inject your body with steroids to help reduce the histamine levels once a month. Side effects include liver failure.... so once again I prefer to stay away from them.
Currently I use steroid cream (triaminicolone.. however you spell it), a skin antibiotic (when needed) and lotions. There is no cure for high levels of IGE (unless technology allows us to change our DNA structure). There is only ways to help reduce the effects of high IGE levels. Use your own judgement, research and experiences to determine the best direction for you. My best suggestion is find the most natural way to deal with the condition for I find it to be the safest. This includes programs to help alleviate stress (exercising, meditation, music etc..) and healthy eating (daily dark green veggies and fruits are very important!) Stay away from allergic foods and environments. Make sure the sleeping area is very clean with clean sheets and free of any dust, germs or allergens. Air purifiers help take out the allergens out of the air. Humidifiers and vaporizers help keep the skin moist. Switch lotions after use for long times since your body may eventually react to it (after awhile you can originally return to using the lotion once again). Over the past year I have found out that by just staying happier makes my skin feel better. I still hope for the day in which I can be completely free of medicine, but I do realize and accept the fact this condition may follow me into my gray years. I plan to continue my research in nutrition and chemicals hoping to find a safer and more natural way to deal with this condition. I hope my experience helps encourage you and educates you in dealing with your condition or in helping someone deal with theirs.
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