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Severe Eczema!!

Hi! I am a 28 year old with severe eczema, diagnosed back in 2001 (as an adult, never had this as a child, just severe allergies). I was on elidel, protopic back then and my ecemza was mild. In 2004 I started getting worse and started allergy shots. This helped for awhile. I then moved to GA in 2006 and my eczema has gone crazy!! I have seen one dermatologist and she told me that I needed to see another dermatologist because she did not know what else to do (after not really trying much except topical creams). So I went to see an Allergist in Atlanta. I have been seeing him, started on allergy shots again, allegra, and topical medications. My eczema started to get worse. I had food allergy testing and now allergic to corn and eggs. I was on a diet for a while of chicken and rice and could not tell any difference in my eczema. The worst part is my itching, it is so INTENSE! I stopped the allergy shots because they were not helping and now I am on a immunosuppresant - cyclosporine to try to decrease my eczema. I can tell a small difference so far, but the itching is still there. I am now seeing another dermatologist through Emory Healthcare and the first time I saw her she put me on Accolate and Zantac along with my Zyrtec. This is not helping. I am still itching so bad. This last week I ended up going back to my allergist because I was covered in welts from my neck down. So painful and itchy. I am not sleeping that well due to itching and it is really effecting my daily life. Does anyone have any ideas for me to talk with my docs about what my help me with my eczema and itching. I feel like I need more allergy testing but am not sure what???? And does anyone itch this bad?? I have been anxious and any time I sweat it starts to flare up! Any ideas or comments would be greatly appreciated. Sorry this is so long I just want to try to figure out what is going on!!!

Thanks so much for listening!!!! :)
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Avatar universal
HI there,
My 6 month old daughter had eczema. I decided not to use steroids and my life changed as I tried to find natural products for her. Aveeno eczema lotion burned her skin. Eventually I came up with a recipe that healed her. 6 years later, eczema is still gone, she does have sensitive skin that welts with mosquito bites. I am now a "skin therapist" as healing others skin has become my lifes purpose. You can go to my website cocolene . com and go to the skin relief section. Derma Relief for itch, Rescue salve for open skin and of course we have to take careo f the insides as well. You can read my story on the tab "Who is Sajata." Feel free to write or call me 919-922-1818 Hope I can help.  Sajata
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Avatar universal
Healing now from my eczema with the help of SALINE SOLUTION, PRESNIDONE, gentamycin, elimination diet, PHYSIOGEL AI, AVEENO LOTION AND WASH SOAP, LUKEWARM BATH of at most 10 mins..
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Avatar universal
I have severe eczema as well, I know how you feel, you can ask for a mometasone furoate 0.1% oint, put it on, once your eczema goes away, you have to buy Nesporin, the lotion brand, it will help moisturize your skin and keep it from being dry and itchy.  Hope this helps!
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Avatar universal
It's February 2016 and I just read your issue from back in 2008.  Are you still dealing with the insane Eczema???  If so, I have the remedy.  You need to get on Chlorella and Spirulina ASAP daily and if possible, for the rest of your life!  They are BOTH significantly vital to long-term freedom from Eczema.  Eczema is an internal problem.  Your system is toxic and needs to be cleaned.  I am an Eczema sufferer and was about to lose my mind...went to several Dermatologist's who did NOTHING for me and I didn't want the permanent damage of steroid creams.  After a year of research, I discovered the AMAZING HEALTH BENEFITS of Chlorella and Spirulina.  They're both organic algae that grows in the Orient and you can take either a powder form or tablet form.  It's GOOD to eat a healthy balanced diet with LOW to NO sugar if possible and staying clear of DAIRY & EGG products really helped me A LOT.  Although I eat cheese and don't have any issues.  Once I started the Chlorella & Spirulina my Eczema STOPPED itching and began to totally disappear....my skin is finally back to it's beautiful creamy self!!!  Chlorella & Spirulina BOTH does many other wonderful things too...they detox the body of heavy metals, rebuild cell tissue for healthy skin cells which can also prevent premature aging and millions of other things!  Hopefully, you'll get his message!  
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Avatar universal
Hi.I have very similar symptoms to yours.i have severe eczema with nodular prurigo which kept getting infected.the itch was horendous 3 hours sleep a night itchy,bleeding,swollen and i seem to sweat easy too.Doctors could not help,specialist tried me on 500 mg of Mycophenolate that never worked then they tried  azathioprine (Imuran),that never work infact i had massive side effects,including big swellings on legs and arms as well as other places so i could not take them.then they said i could try, cyclosporine which i refused because of what side effects it as.I had no improvments.because my skin was infected i had to take anti-biotics as well as steriod creams.this as reduced the itching greatly but i still have bad looking skin really does not look nice.even tho i was eating i was loosing weight.So if you are still itching ask your specialist to check skin for infection.I had to take Flucloxacillin 500mg as well as dermovate andreducing to  the weaker steriod ointment called betnovate for months before my infection cleared up now i dont  itch that much but  i hate what it has done to the look and texture of my skin.The specialist say there is not a cure for what have but they can try to contain it.
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Avatar universal
@ TT08

Also, sleep is very important.  I started taking Ambien a month ago, not to help me fall asleep but to stay asleep.  If you can tolerate this drug without any issues, and some people do have issues with it, it makes for a good night's sleep and you can at least escape your itching for a good 7 hours.
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Avatar universal
@ cnjsommers.

I had the same kind of "allergic" reaction to my own sweat, you refer to.

I spoke to my dermatologist who is excellent, and she said you can't be allergic to your own sweat but the heat and perspiration does inflame rashes you already have or could cause a flare.  One reason for this is this raises the levels of histamines in your body, or those histamines rise to the skin level.  I am an avid tennis player but I recently have taken time away from it because it's impossible not to play here in Miami without sweating profusely this time of year.  I would advise anyone who is prone to flaring to avoid sweating, and avoid any activities that raise the histamine levels.  That means eliminating alcohol altogether, and also to shower in water that is cooler than you would like.  Doesn't have to be cold water but just cooler.  Also, avoid spicy foods that could make you feel like you are sweating.  Anything with chilis in them, for example.
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Avatar universal
@ TT08
I read your post from 2008 and commiserated with you as I have had ezcema for the past 3 years, and a week ago Tuesday my skin was infected (for the 2nd time) and I felt the life seeping out of me.  Fortunately, my doctor prescribed doxycycline and the infection was eliminated.  And a week ago Wednesday, I was referred to a terrific doctor at U of Miami Hospital Derm Clinic, a Dr Kirshner, and he put my on Cyclisporine and 9 days later it's hugely effective for me.  I saw you said it hadn't worked for you, and that pained me to read that as I was going to suggest that to you.

For the past 4 days I have been itch free after having the most horrible ezcema, weeping in a few places that were infected.  The lesions I saw on my body were just frightening, and those are healing very rapidly now with the new med so it's like a new lease on life.  What I did find soothing for the itch last week when it was just so intense I was beside myself, was cold compresses.  Put some ice in a bowl of cold water so it's really nice and cold, and use wash clothes and wrap it around the areas that itch.  It doesn't relieve the itch that long, and you have to keep applying more cold wash clothes. But, it should give you some much needed temporary relief.

What you don't want to do is use ice directly on your rashes !  I did that and it's in those areas that I got weeping eczema and the resulting infection.  One more thing I would ask your physician.  If you are still on Cyclisporine, or when you were, were you on the highest dose for your weight?  I am on the highest dose and for me it's a miracle drug.  I wonder if you weren't on a high enough dose when you were on it.  Dr. Kirshner at UM told me that it's safe to take at the highest dose for at least 2 years, but I am responding to the med wonderfully and he told me he would reduce the doseage and if my skin is normal move me to other less potent meds to maintain it.

I hope you are feeling better, and have found something that works..
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Avatar universal
I have had eczema for 43 years. When I was a child the only thing that would help was tar, its very old school but it works. It takes the itch away and does not have the side effects of Corticosteroids. Please keep in mind with your child (I tell you because when I was growing up I did not know this until I was older) I did not know that Corticosteroids cause Cushing Syndrome over time. There is something with those with severe asthma and eczema that has to do with the pituitary gland and the adrenal glands. Once you start down the road of Corticosteroids your body stops producing. Now, please keep in mind that most children grow out of eczema, so Corticosteroids for short periods are not as bad. If eczema runs in your family and typically disappears over adolescence by all means entertain the idea in low doses. But, if eczema and asthma are persistent in your family and does not go away limit the Corticosteroids as much as humanely possible. Ask your doctor about IgE levels. He should be able to explain what that means. I wish you all the luck with your son, I know it is incredibly difficult for a mother. God bless. T
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Avatar universal
My 1-year-old son has very severe eczema and has since about 2 weeks old. He is an open wound. He itches like crazy and we have gotten him under control at this point with steroid creams. Elidel, Triemcinilon, Aquaphor, Cediphil, plus have him on Zertec, and Benidril. He also has stopped growing. He was in the 95th percentile for weight and height at 2 weeks old now he is not even on the chart for weight and height. They are linking this to his kidney function not getting the acid into his bladder and causing the blood to become more acidic which causes growth retardation. he has lost 2 pounds since his 9 month check up so he is now on Bicitra for that. We changed doctors and they are still in the process of running tons of tests this last week and they did find out he is allergic to something which is causing all of his problems as well as having a metabolic disorder. They are still running more tests to see what metabolic disorder or disease he has. Then I hope I hope I hope we will be able to clear him up for good. We also live in Colorado, which is a very dry climate, which does not help. One thing we have found that works well to stop him from scratching is mixing Aquaphor and Cediphil lotion then grease him up every couple of hours. also to the person that talked about his sweat causing a breakout. My brother-in-law has that same thing and its because he is allergic to his own sweat. Take a shower ASAP after working out that will help.
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Avatar universal
I am 39 and have been taking Xolair for nearly 5 years. I have asthma, but the real reason my doctors put me on it was for my very serious eczema. Even though Xolair is not officially approved for this, my amazing doctors went out on a limb and got me approved. It has changed my life. I went about 4 years without a serious flare up and am only having one now (in my opinion) because I moved across country and have been reacting to the stress of that (move, quitting job, new allergens, etc.).

If I can be of any help to any of you, please feel free to email me.

J.
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Avatar universal
I have just started dealing with the fact that the dr has said, preliminary tests show I have eczema. He isn't sure what is causing it or what we are going to do to treat it yet. So far, I am on a cream and prednisone pills which help settle the itch although they are not 100% efffective. In the past, I have had breakouts and i found that SARNA Lotion is a life saver. It can be purchased over the counter at any drugstore or market. It is a lotion with a menthol feel to it. It is soothing and cooling and makes the itchies calm down quite a bit. It won't heal whatever you have but it certainly brings relief. The lotion itself isn't cheap but I swear by the results.
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Avatar universal
I have severe eczema and I am at the end of my rope..  I am considering taking xolair -does it work?
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Avatar universal
Your story sound very similar to mine.  I am 29 years old from Chicago and have been living with eczma for as long as I can remember.  As a baby, I was diagnosed with milk allergies which progressed to multiple food allergies as an adult.  Diganosed with eczma that I was suppose to out grow is now on the verge of uncontrollable.  To boot, I have asthma and perineal allergies.  I've been to dermatologits, allergist, and immunologist.  All have done the same thing antihistamines, ointments, corticosteroids, avoid triggers, diet, lubricate, etc.  I could go down the whole list of everything else I've tried but that would take too long.  The only time I have temporary relief is when I'm on corticosteroids.  It becomes so frustrating.  You do this or that but it just doesn't help.  If people only knew how it feels to be itchy every second of everyday of your life.  

However, I think there is hope.  I just found out about a medication called Xolair that is used to treat severe asthma by blocking IgE and thereby histamine release. Although not approved for eczma, I think it would help because both eczma and asthma are rooted in similar pathologies.  Just to say, I was very disappointed with my allergist because he never mentioned this to me.  I plan to approch my allergist with this option.  I'll let you know how it turns out.
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Avatar universal
One thing that I found also that helped was Desitin Creamy. It's a diaper rash ointment, but it's so thick that it protects from the water and clothing, etc. which are likely to make you itch. It also helps to soothe the blistering rash you can get where skin rubs skin, such as under breasts or in pelvic areas around the legs and such.

It's not the best thing for the itch, but it helps to calm the rash and protect it from other irritants, so it's worth a try if all else fails.
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Avatar universal
I know all about the itching. Several years ago I was working at a vet hospital when I started having the most severe breakout I had ever encountered in all of my (then) 40 years.

To make a long story short, working with an allergist didn't help except to identify over six pages of things I am sensitive to. I got more help from a wound care specialist in my area.  He discovered that I had a Staph infection on both arms due to dust mites from the house carpeting boring into my inflammed skin.

Obviously I had to take radical precautions and changes which included tearing up and replacing every carpet in our house. Any carpet put down prior to around 1997 will be loaded with dust mites. The new carpets have a specially treated pad under them to kill mites.

As for bedding, even though I put allergy protectors over all of them, I still itched. I finally came to the conclusion that the plastic was holding my body heat in. My sweat was salty and therefore, irritating my already inflamed skin. So I chucked both the mattress and box springs. I got a whole new set (without plastic protectors), and found that I slept quite nicely for the first time in years.

We also had to remove our furnace and put in a new one with totally new ductwork and a hepa filter system. We had to put in central air which would help filter out dust and pollutants. In addition, the doctor ordered a specialized home filtration system that would sanitize the air when necessary and would filter even more dust and allergens out of the air.

I cannot dry clothes out of doors. I cannot ride with any windows down. I must have air conditioning to filter the air. I am not allowed to sleep with windows open or to be outside for more than a few minutes.

All of that helped the overall problem, but the itching was still there. So here is what I found worked for me. You may have already tried these or not. If you haven't, I would give it a shot. They can't hurt and may help a lot.

1.)  Switch to Basis soap. It's hypoallergenic and free of perfumes, dyes and the like.  (I had even tried Johnson's Baby Shampoo once and broke out from it I was so sensitive.)

2.)  Check your laundry detergent. If it has any perfumes or dyes in it, switch to something like ALL Free and Clear. Also, stop using dryer sheets or fabric softners in your wash. Pre-treaters are another source of itching that I can't use. If one piece of my clothing gets mixed up in a load where anything else has been treated, I break out within a couple of minutes.

Note: One thing to check also is your dish soap. If you have any soap with perfumes, dyes, bleach, etc. in it; I would get rid of it and try something else that is free of all those things. Even if you handle dish washer detergent, it could be getting on your skin and making you itch.

3.) Try to stop wearing any perfumes, colognes, aftershaves, makeup, hairspray, even jewelry too. If it gets better after a month or so, then SLOWLY add back one thing at a time. You should know within a couple of days if not sooner, whether you are allergic to it or not. Other things to consider that might cause itching are bubble baths, douches, shampoos, conditioners, hair dyes, permanent wave solutions, and anything you spray into the air that could settle on your skin and cause it to itch such as Pledge, Lysol, Windex, etc. You may not realize that the spray is blowing on you, but if you are allergic to it, it can cause a huge problem with itching and open sores.

4.) Keep a humidifier in your room. Most people can stand their air much drier than I can. I have found that around 60% humidity helps my dry skin and also helps keep my eyes from drying out and my nose from bleeding.

5.) Try to take showers, not baths. Baths wash moisture away from the skin. A shower leaves more moisture in. Get in and out as quickly as possible. I know it's hard, but try to air dry as much as possible so your skin will retain as much moisture as it can.

6.) Use 100% cotton clothing and especially underwear as much as you can. Finding it is hard these days. Especially trying to find a 100% cotton bra that is still a support bra. Most have spandex, nylon, lycra and who knows what else in them. All of which may cause you to itch.

7.) Keep COOL! I know from personal experience that I had times where I swore I was perfectly comfortable, yet my skin was perspiring. That persperation would eat me alive. Everywhere I sweat, I itched and burned until I wanted to scream.

Keeping cool keeps the sweat from getting into the rash and causing it to itch. Staying indoors on summer days may not seem like much fun, but it's necessary when you have a really severe case of eczema. Especially if you live in a southern climate like Georgia.

8.) The doctor had me trying several things. Most never helped me, but might help you. One thing I never thought of was sun tan lotion! Solarcaine has a Burn Relief Aloe Extra Gel. It's green and comes in a bottle or spray. I use the bottle myself. The Lidocaine HCI helped to calm the itching. You could try it. Also, I found that of all the meds I tried, the prescription for prednisone helped me more than anything else we tried. It would not only heal everything up, but keep it that way even after I stopped using it. For awhile anyway.

If your doctor is not doing everything he can to help you, then find another doctor. I was so blessed to finally find one who took me seriously. He is helping me to get on Disability due to my severe skin problem (I lost three jobs due to customers calling the local and state health departments and complaining about my flaking, blistering, bleeding skin). Now I am in a totally controlled enviornment so I do not come into contact with things I am allergic to.

But by far the best thing I have ever found that helped, was a praying church! Week after week after week for years they have prayed for me. Finally one day it happened. They prayed for me and by the time church was let out, all the sores and rashes were gone. The itching stopped and I have been totally healed ever since! Even things that used to break me out have no effect on me now.

Try to stay cool and best of luck. I'll be praying for you because I know how miserable that is.

God Bless!
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Avatar universal
I get it on my eyelids. With me what triggers an attack of eczema is stress. I thought it was allergies (I have seasonal grass and trees allergy), but now realize what gets the eczema going is stress, stress, stress. And worry. That will trigger it every time. I have to force myself to relax to feel better. It helps the allergies too. Hope this helps.  
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Avatar universal
is hydroxzine a steroid
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Avatar universal
hi my daughter has eczema really bad try the hydroxzine for the itch,and aquaphor its like a vaseline base lotion you can get at wal greens,and she is wrapped in saran wrap hand,arms legs and feet at night,she takes a shot every 2 weeks called xolair it really helped 100%,she does a bleach bath at night and that helps to if you need more suggestions let me know my daughter has it so bad...
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1 Comments
I'm pretty sure that makes no sense, also.. I know how she feels, I hope your daughter gets better, I have the really severe eczema but you can scroll down to see what might work for your daughter
326352 tn?1310994295
For the itching, I highly recommend the prescription drug Atarax.  It's a wonder drug for itching.  I used it as a child for nervous itching, to the point of scratching welts and sores along my midsection and legs.  I give it to my 2 year old now when her eczema gets out of control.

It will help you relax and sleep.  Hope this will bring you some help.
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Avatar universal
What is treatmet for 13 year old boy who has open sores all over his body. Dr.s have called it atopic dermatitis or PN. He has already been treated been with: ski moisturizers, oatmeal bath treatments
streoid ointments, oral anti-biotics and ointments,a variety of anit-histimines and of avoidance of all foods, plants (grass, trees), dust mites and animals that he is alergic to.He itches ucontrollably each evening. What can stop his itchig so that his sores ca finally heal short of tying up his hands?
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Avatar universal
i understand how your itching is driving you crazy.........have a suggestion that you might really want to try.........do you take efa's (essential fatty acids)........it is an oil that helps many, many things including eczema.........don't take my word for it:  read up on it online.........efa's are very good for allergies, skin problems, nails/hair, weight loss, heart, brain, healing overall, good for infections.......all kinds of stuff......the best efa's have flaxseed oil, borage oil, primrose oil and fish oil in them.........try to find one that has all 3 in them.......i order mine ("total omega" liquid ) from Barleans.com.........you can get efa's from fish but you have to eat a lot of it..........also you might want to try some milk thistle LIQUID......since i have been taking my efa's all sort of ailments and allergies have disappeared for me..........i tell everyone about how good i feel now......and efa's are in baby formula and in premium pet food too........hope this helps........GOOD LUCK!!!!
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Avatar universal
Hi! Thanks for the comment. I have been trying everything possible to saty away from the avoidants but I believe maybe more intense testing would be the best option. I know that I allergic to dust mites, which I have been all my life but I have all the encasings for my bed and my husband puti n hardwood floors last summer, corn and eggs which I stay away from. what about a patch test? Does this check for ingredients that are in every day products?? 'Thansk
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Avatar universal
Hi,
Eczema, or dermatitis, is a reaction pattern that presents with variable clinical and histologic findings; it is the final common expression for a number of disorders.
The usual treatment should be Avoidance of irritants; cutaneous hydration; topical glucocorticoids; treatment of infected lesions. Systemic glucocorticoids only for severe exacerbations unresponsive to topical conservative therapy.
Keep me informed.
Bye.
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