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Hyper IgE and Cyclosporin
Ive had a condition since when I was born with extremely elevated IgE levels. In the past they reached almost 40,000. Now I recently got it checked and it is at 80,000, the highest its even been. With that I also have a great increase in Eosinophil Blood Count. In the past I was treated through IVIG to reduce it and control my immune system. But for years I have been off that. But recently I visited an allergist/immunologist and he suggests using Cyclosporin (Ciclosporin) an immunomodulator/immunosuppressent, is this advisable and will it show good results? I am concerened as to what it will do, and what effects may happen, because in the past I was treated with steroids (prednasone) in order to treat the IgE as well as bring my dermatitis under control.
My Symptoms Due to the IgE Include:
Severe Dermatitis/Eczema
Sinus Problems/Resperatory Allergies
Asthma
Food Allergies
And recently I have been getting extremely badheadaches, nausea, diziness which cannot be concluded for (originally it was thought to be migraines, but it has been persisting for almost 2 months, hence unlikely), and some doctors i have visited as well as some relative doctors, have said this may be a symptom of my extreme elevation in IgE and Eosinophil. I havent heard this as being a symptom, but could it?
My Symptoms Due to the IgE Include:
Severe Dermatitis/Eczema
Sinus Problems/Resperatory Allergies
Asthma
Food Allergies
And recently I have been getting extremely badheadaches, nausea, diziness which cannot be concluded for (originally it was thought to be migraines, but it has been persisting for almost 2 months, hence unlikely), and some doctors i have visited as well as some relative doctors, have said this may be a symptom of my extreme elevation in IgE and Eosinophil. I havent heard this as being a symptom, but could it?
My daughter also has an eosinophilic disease from high eos in her blood and organs. She was on Cyclosponrin a few years ago, and it did lower her counts. It did not have many side effects. I woould give it a try. ALso there is an anti-IgE drug out called Xolair. Have they not considered this?
By the way the disease my daughter has is called Churg-Strauss. You may want to look it up. SHe also has high IgE (not anywhere near yours though). Also, asthma, allergies, and high eosinophil count are all part of this diease. ALso many get bad migraines that can go on for weeks during a flare. It can effect any organ, and if in the gut certainly causing nausea, as my daughter has it badly in her gut, and is nauseated every day. She also is frequently dizzy, and has even lost her balance and fell. It can affect any organ, and her drs think this dizziness, migraines are from central nervous system involvement. It inflames and irritates the nerves and can literally cause just about any symptom you could possibly have. You should look it up, and ask your dr about it. it is very rare and you may have a hard time finding a dr who knows something about it. Good Luck!!
Cindy
By the way the disease my daughter has is called Churg-Strauss. You may want to look it up. SHe also has high IgE (not anywhere near yours though). Also, asthma, allergies, and high eosinophil count are all part of this diease. ALso many get bad migraines that can go on for weeks during a flare. It can effect any organ, and if in the gut certainly causing nausea, as my daughter has it badly in her gut, and is nauseated every day. She also is frequently dizzy, and has even lost her balance and fell. It can affect any organ, and her drs think this dizziness, migraines are from central nervous system involvement. It inflames and irritates the nerves and can literally cause just about any symptom you could possibly have. You should look it up, and ask your dr about it. it is very rare and you may have a hard time finding a dr who knows something about it. Good Luck!!
Cindy
I have a son who is 6 and has tested with elevated IgE. At 18 months it was about 7,000. It stayed around there when we tested him at 3. Then at 5 1/2 he tested at 10,000. It broke my heart.
I am lost at what to do and who to take him to. He has moderate asthma, severe eczema and extensive food allergies. He is on an incredibly restricted diet and we have done everything to limit dust in our house due to dust mite allergy. I do not recall his doctor testing for Eosinophil Blood count. Should I?
What treatments have been helpful for you? Is this Hyper IgE or Job's syndrome? His doctor, who is an allergist/immunologist won't give him that diagnosis, but then says even if it is there is no treatment/cure anyway. I've read about IVIG and Cyclosporin and have brought it up to him. He has never really discuss treatment for my son beyond oral steroids and antibiotics. We live in Orange County, CA.
Any insight or details about what you have been through so we can get an idea of what to expect will be much appreciated.
I am lost at what to do and who to take him to. He has moderate asthma, severe eczema and extensive food allergies. He is on an incredibly restricted diet and we have done everything to limit dust in our house due to dust mite allergy. I do not recall his doctor testing for Eosinophil Blood count. Should I?
What treatments have been helpful for you? Is this Hyper IgE or Job's syndrome? His doctor, who is an allergist/immunologist won't give him that diagnosis, but then says even if it is there is no treatment/cure anyway. I've read about IVIG and Cyclosporin and have brought it up to him. He has never really discuss treatment for my son beyond oral steroids and antibiotics. We live in Orange County, CA.
Any insight or details about what you have been through so we can get an idea of what to expect will be much appreciated.
Hello. Im so sorry about your son, I hope he does well soon. But I toally understand how he and you must be feeling. Ive had this condition since I was born, so I know alot about ti, and ive experienced much pain in that. I hope I can help.
When I was younger, I had to visit UCLA, under the care of Dr. Stiehm, who was head of the Immunology department there. They had put me on IVIG when I was younger to help reduce the IGE, I have been off it for years. I significantly brought down my IgE, but one thing should be noted, its not 100% safe. The stuff used in the IV, comes from other blood donors and their plasma, there is a risk of nfection and even HIV. I am not longer on it. So I wouldnt suggest it, since there are risks.
But in the recent years my IgE shot up considerably as you can tell, its at 80,000+ now. I also have extremely bad eczema, and asthma, and tons of food allergies and dust allergies, just like your son. Almost identical.
In terms of the Eczema, have you tried an ointment called Protopic? Its a tacrolimus ointment, which acts as an immunosuppresor. Because of that, my skin condition is in great control, even though it does have its ups and downs. But it helps with the torture of itching. It is however expensive, and also carries a black box warning of possible canceric sideeffects, however that hasnt been proven yet, its just a warning. I have been on protopic for years, and Its helping alot. You should talk to your doctor about, and maybe consult a dermatologist for his opinion on protopic. I was actually one of the first to try protopic before it was even released. It works like a miracle. In the beginning it may sting, and take a significant ammount of time before you see results, but once it starts wokring, it makes you feel much better.
In terms of allergies that are enviornmental. I was told by my immunologist to invest in some things. Certain bed sheets, and covers, as well as air purifiers which will reduce the allergen level and dust mite level im exposted to. You might want to consider that. I am going to try it out soon. I am also advised to remove the carpet in my room. So i am looking into wooden flooring. you can check these things out at www.missionallergy.com it will help greatly, I think.
In terms of Eosinophil count, I dont think its important to check it as per say, but it would interesting to see if it increased. For a normal person to have Eosinophil counts high is symptom of a condition called Hypereosinophilic Syndrome, technically a leukemia. But for people like me and your son, ours are elevated because of our elevated IgE. So dont worry about it too much. If you can control the IgE you can control the Eosinophils too.
In terms of Job's syndrome. I dont have it. I just have a very high level of IgE. Jobs Syndrome has distinct characteristics and symptoms, like continous infections, extremely weak bone denisty, sometimes even holes in the bones. Coarse Feces. It causes dental problems as well. I havent been diagnosed with this either, so maybe your son is the same situation as me. We jsut suffer from a high ige level. I pray that is the situation.
In terms of your allergist/immunologist not discussing these things, perhaps he isnt experienced in this feild. Its very hard to find someone who understands this condition, becaue its not well known. Thats why when i was a child, I was sent to UCLA because only they had some idea of what was going on. Now however many immunolgoists are exposed to this. Perhaps you should get another immunologist consult. And this may bring you relief, but I live in Orange County as well. I see an Immunologist here next to Choc/St Josephs. He is really good, and he is the one who suggested Cyclosporin. I live in Tustin. Ive been treated with steroids as well, and antibiotics for staph infections, but they only help to an extent, they arnt permanent treatments, thats why i was advised to try cyclosporin.
Since i live near by you, I am open and willing to talk to you and share many things about my 20 years of experience with this condition. I would love to see yoru son benifit and be much better, and improve his childhood. Mine was rough because of these conditions, and nothing would make happier then to see another child live successfully. Its very hard on the patient, and on the parents. I live in Tustin. If you live near by I am willing to meet up with you guys sometime. You can contact me at ***@****. But please dont hesitate in asking. I understand what both him and you are going through.
My name is Suren btw. Reply soon.
When I was younger, I had to visit UCLA, under the care of Dr. Stiehm, who was head of the Immunology department there. They had put me on IVIG when I was younger to help reduce the IGE, I have been off it for years. I significantly brought down my IgE, but one thing should be noted, its not 100% safe. The stuff used in the IV, comes from other blood donors and their plasma, there is a risk of nfection and even HIV. I am not longer on it. So I wouldnt suggest it, since there are risks.
But in the recent years my IgE shot up considerably as you can tell, its at 80,000+ now. I also have extremely bad eczema, and asthma, and tons of food allergies and dust allergies, just like your son. Almost identical.
In terms of the Eczema, have you tried an ointment called Protopic? Its a tacrolimus ointment, which acts as an immunosuppresor. Because of that, my skin condition is in great control, even though it does have its ups and downs. But it helps with the torture of itching. It is however expensive, and also carries a black box warning of possible canceric sideeffects, however that hasnt been proven yet, its just a warning. I have been on protopic for years, and Its helping alot. You should talk to your doctor about, and maybe consult a dermatologist for his opinion on protopic. I was actually one of the first to try protopic before it was even released. It works like a miracle. In the beginning it may sting, and take a significant ammount of time before you see results, but once it starts wokring, it makes you feel much better.
In terms of allergies that are enviornmental. I was told by my immunologist to invest in some things. Certain bed sheets, and covers, as well as air purifiers which will reduce the allergen level and dust mite level im exposted to. You might want to consider that. I am going to try it out soon. I am also advised to remove the carpet in my room. So i am looking into wooden flooring. you can check these things out at www.missionallergy.com it will help greatly, I think.
In terms of Eosinophil count, I dont think its important to check it as per say, but it would interesting to see if it increased. For a normal person to have Eosinophil counts high is symptom of a condition called Hypereosinophilic Syndrome, technically a leukemia. But for people like me and your son, ours are elevated because of our elevated IgE. So dont worry about it too much. If you can control the IgE you can control the Eosinophils too.
In terms of Job's syndrome. I dont have it. I just have a very high level of IgE. Jobs Syndrome has distinct characteristics and symptoms, like continous infections, extremely weak bone denisty, sometimes even holes in the bones. Coarse Feces. It causes dental problems as well. I havent been diagnosed with this either, so maybe your son is the same situation as me. We jsut suffer from a high ige level. I pray that is the situation.
In terms of your allergist/immunologist not discussing these things, perhaps he isnt experienced in this feild. Its very hard to find someone who understands this condition, becaue its not well known. Thats why when i was a child, I was sent to UCLA because only they had some idea of what was going on. Now however many immunolgoists are exposed to this. Perhaps you should get another immunologist consult. And this may bring you relief, but I live in Orange County as well. I see an Immunologist here next to Choc/St Josephs. He is really good, and he is the one who suggested Cyclosporin. I live in Tustin. Ive been treated with steroids as well, and antibiotics for staph infections, but they only help to an extent, they arnt permanent treatments, thats why i was advised to try cyclosporin.
Since i live near by you, I am open and willing to talk to you and share many things about my 20 years of experience with this condition. I would love to see yoru son benifit and be much better, and improve his childhood. Mine was rough because of these conditions, and nothing would make happier then to see another child live successfully. Its very hard on the patient, and on the parents. I live in Tustin. If you live near by I am willing to meet up with you guys sometime. You can contact me at ***@****. But please dont hesitate in asking. I understand what both him and you are going through.
My name is Suren btw. Reply soon.
sorry this thing blocked out my email address. it is neemai108 at yahoo dot com. hopefully this will work.
Hii, thanks for your suggestion. Actually Ive heard of Xolair and the Anti-Ige Treatment for a long time now. Like I mentioned to Christie 75, that i was informed about alot of these treatments or given them before they were released, such as the case with Protopic. In terms of Xolair, ive been told it will have no or little effect on me because it can only bind so many IgE Antibodies, and my level of IgE is sky high well over 80,000+ the last time i checked. And even if it did work, the chances of a stronger and harsher relapse is great with the treatment if i dont continue it and take it on time. (I believe once a month shots). Hence none of my doctors or immunologists and allergists have suggested that treatment, simply because im out of its scope. They always hope that maybe some day in the future a more potent treatment will be released that can handle cases like me. So far there are very few people who have IgE levels above 50,000 (and reminder: mine is 80,000+ now). On average those who have extremely high IgE dont exceed 10-15 thousand (or so im told).
Regarding the headaches and migraines im having, ill take your suggestion. I will ask what the doctor says about that. I dont know, but I havent read IgE being related to such symptoms. And Ive had high levels of IgE for over 20 years. But i am going to be starting the Cyclosporin this week hopefully, and that will bring down the IgE and Eosinophil level which im hoping may affect hte headaches and help them go away. If they do go away with that, then I know for a fact those headaches and dizzy spells were symptomatic of my high IgE. Or somehow allergy related. But before I ask the doctor, I want to give this Cyclosporin a shot and see how it works out. I dont want to complicate things. Ive learned from the past that complicating medical situations isnt great, and just causes more pain.
But thanks once again for your concern and suggestions. I truely appreciate them.
Regarding the headaches and migraines im having, ill take your suggestion. I will ask what the doctor says about that. I dont know, but I havent read IgE being related to such symptoms. And Ive had high levels of IgE for over 20 years. But i am going to be starting the Cyclosporin this week hopefully, and that will bring down the IgE and Eosinophil level which im hoping may affect hte headaches and help them go away. If they do go away with that, then I know for a fact those headaches and dizzy spells were symptomatic of my high IgE. Or somehow allergy related. But before I ask the doctor, I want to give this Cyclosporin a shot and see how it works out. I dont want to complicate things. Ive learned from the past that complicating medical situations isnt great, and just causes more pain.
But thanks once again for your concern and suggestions. I truely appreciate them.
Neemai,
Can I get an update on how taking the Cyclosporin went? I have ige in the 40,000 range with sever excema. I was on Xolair for about a year and it really did nothing for me, so I went off it. Right now Im taking prednasone, which is horrible, but its the only way I can live a normal life.
Any advice would be appreciated.
Thanks,
Dave
Can I get an update on how taking the Cyclosporin went? I have ige in the 40,000 range with sever excema. I was on Xolair for about a year and it really did nothing for me, so I went off it. Right now Im taking prednasone, which is horrible, but its the only way I can live a normal life.
Any advice would be appreciated.
Thanks,
Dave
Hi Christie,
I can sympathize with your frustration and pain. I too have lived with serve eczema and asthma since birth. I am now 45. Living with it as a child was very difficult and at times very catastrophic. Now that I am older, I still have it, but I am hospitalized a lot less. My lungs seem to be more of an issue, due to scarring.
Eosinophil Blood Count is pretty typical on a regular blood test, but you might want them to check his Folic Acid, this at least you can supplement. Also for allergies to aspergillus (a mold).
I can not comment on Cyclosporin, but I can comment on Metholtrexate (very simular). I have now been on it for about a year. Apparently it better (in the long run) than cortisone. I can tell you that over the years of high doses of predisone (cortisone), it can really do damage to your body especially your bones.
I have also been on Xolair and while it did help my lungs, I found it really thickened my skin. This isn't commonly reported as a side effect though, so it could just be me.
There is a new drug, it may be available in the US now called Dupilumab. It's showing incredible promise with relieving the itching and symptoms.
One thing is for sure, try the best you can to ensure your child does not get infections from open wounds. He can be susceptible to staff infections and candidas infections. Watch his ears as well. These can all be avoided by use a very very gentle cleanser.
The best doctor, I found was an Immunologist, they often specialize in allergies too. But, don't let a doctor just pass off allergies. Make sure the doctors treat him well. Also, the best treatment I have ever had was at a children's hospital, any hospital that teaches generally seems to want to get to the bottom of things.
Good luck and all the best to you and your son, I will keep you in my prayers.
T.
I can sympathize with your frustration and pain. I too have lived with serve eczema and asthma since birth. I am now 45. Living with it as a child was very difficult and at times very catastrophic. Now that I am older, I still have it, but I am hospitalized a lot less. My lungs seem to be more of an issue, due to scarring.
Eosinophil Blood Count is pretty typical on a regular blood test, but you might want them to check his Folic Acid, this at least you can supplement. Also for allergies to aspergillus (a mold).
I can not comment on Cyclosporin, but I can comment on Metholtrexate (very simular). I have now been on it for about a year. Apparently it better (in the long run) than cortisone. I can tell you that over the years of high doses of predisone (cortisone), it can really do damage to your body especially your bones.
I have also been on Xolair and while it did help my lungs, I found it really thickened my skin. This isn't commonly reported as a side effect though, so it could just be me.
There is a new drug, it may be available in the US now called Dupilumab. It's showing incredible promise with relieving the itching and symptoms.
One thing is for sure, try the best you can to ensure your child does not get infections from open wounds. He can be susceptible to staff infections and candidas infections. Watch his ears as well. These can all be avoided by use a very very gentle cleanser.
The best doctor, I found was an Immunologist, they often specialize in allergies too. But, don't let a doctor just pass off allergies. Make sure the doctors treat him well. Also, the best treatment I have ever had was at a children's hospital, any hospital that teaches generally seems to want to get to the bottom of things.
Good luck and all the best to you and your son, I will keep you in my prayers.
T.
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