general eczema discussions

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How harmful are steroid creams?

Postby Seema on Thu Sep 15, 2011 5:50 pm

Hi Everyone,

My son is 2.8 years old and suffering with sever eczema. It started very early when he was 2 months old. I have used hydrocorisone(1%) once a day on and off until he was 2 years old. It was just on his knee folds and few patches on his back. But from 6 months ago it started getting worse. It slowly appeared on other parts of his body like legs, arms, neck, cheeks, eyelids etc. At the same time I came to know about the side effects of steroid creams and I stopped applying hydrocortisone. I was just using vaseline. We tried homeopathy which had no effect on him. Then we decided to do an allergy test. It was very shocking to know that he has very high allergy to dust and dust mites. He is also allergic to milk, peanuts sesame seeds etc. We have eliminated all these from his food. But his eczema is still very bad. We are also mopping the house everyday, changed his bed, matress etc. But there is no change in his skin. The doctor also gave Zyrtec(antihistamine) and a cream Atopiclair (non steroid cream). We are using this from three weeks but no effect. He doesnot sleep in the night and because of itching, very irritated and cranky all the time. Its very difficult see him in this condition. His entire body is covered with red, itchy patches.

Is how harmful it is use hydrocortisone or any other steroid creem for a toddler? I have lost hopes in everything else. This is one thing which I have not used 7-8 months. Not able to decide if I should use steroid cream as I have heard they are harmful.

Please help.

Thanks,
Seema
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Re: How harmful are steroid creams?

Postby Cara Voller on Fri Sep 16, 2011 9:40 am

Hi Seema,

There are some very informative people on this forum who should be able to give you some good advice but just to let you know we have an online clinic starting on 23 September with doctors and nurses specialising in eczema and skin conditions so please feel free to post your questions to them again when the clinic goes live.

Hope this helps
Cara Voller
 

Re: How harmful are steroid creams?

Postby AnnaB on Fri Sep 16, 2011 12:24 pm

Hi Seema
Steroid use needs to be monitored. General advice is if using for few days does not clear the eczema then you are better off to step up to a stronger steroid to gain control. It is better to use steroid for say 3 days then have 4 days steroid free rather than use a mild steroid everyday. Also moisturise even when skin is good. You have to weigh up the balance of steroid use and the quality of life of your child. If daily activity and sleep are being affected then you have a strong base to use them. i have had to put quality of life over side effects for both of my children.

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Re: How harmful are steroid creams?

Postby Shakka on Fri Sep 16, 2011 9:26 pm

Hi Seema,

I've suffered from eczema for my whole life and I hope my experience might help you. When I was a child my Dad was a pharmacologist and could get steroid cream for me in bulk. Back then in the Sixties nobody knew about the side effects of skin thinning and I was usually smothered in handfuls of Betnovate from what little I can remember and what my Mum told me.

All my adult life I've tried to avoid steroid creams but have never, ever found any real alternative - and I've tried them all, believe me. No, lots of people have just made lots of money from me but I still have eczema. What I can tell you is that I have never had a problem with thinning skin and in fact my skin in general is in remarkably good shape for my age due to using moisturisers my whole life.

I think that not using steroid creams continually, in effect as a moisturiser, is the key as Anna B has said. And never apply them to dry skin - that's torture. The skin should always be gently washed and gently dried, then the cream applied immediately.

It may also set your mind at ease if you have a look at the research done by Gayle Fischer, MBBS, FACD, of The University of Sydney which reveals that routine, long-term use of topical corticosteroids (TCS) for treating children with eczema does not cause any significant, negative side effects. As this is my first post I doubt I can post a link, but I read about her work on the sciencedaily website, where there is an article titled - Use of Topical Corticosteroids in Children With Eczema Does Not Have Negative Side Effects, Study Finds - Apr 22, 2011.

I now make my own gentle, natural goats milk soap and also my own moisturiser which I learned how to do because I simply couldn't find anything to keep my skin comfortable. It only took me 2 years to get it right (for me) but had been about 30 years before I'd realised that there was nothing out there for me, so don't despair, as this is something that you are only starting to learn to deal with and asking for advice is a great place to start. A significant percent of children grow out of eczema and hopefully your son will too.

Other things that have helped me are - eating lots of oily fish - a Swedish study, published online 25 September 2008, showed that this can help children with eczema a great deal, any fish helps, although it's supposed to be introduced before 9 months I still benefit from it at my age and makes my skin feel more comfortable the day after eating it.

Another scientific study which lives up to my experience is that having a greyhound in my home has helped enormously too, even though I was allergic to animal dander as a child.

For house dust mites (my result went off the scale apparently) I buy a new pillow every 3 months or so and use a silk filled duvet but I'm not very good at dusting I'm afraid!

It's hard to cope with I know, but another thing I hope will help you is to understand that this is something that your child will forget about when he is older. I was talking to my older sister about this recently and neither of us can remember much about being the age I was when I was really suffering.

One very, very important thing - please, please don't rely on homeopathic treatment for your child's eczema. Gloria Thomas Sam died at the age of 9 months after her homeopath parents ignored medical advice and treated her infected eczema themselves, Gloria's hair had turned grey and the infection had blinded her before she died. They are now both spending 10 years in jail and their daughter is in a tiny grave. While little Gloria should still be in this world, as her parents are, her life was not in vain if other people learn from their terrible mistakes.

And never, never let anyone with a cold sore near your child when his skin is broken. I have a very rare form of eczema called eczema herpeticum and I know from experience that this is very serious.

So really, thinning the skin is something that should come about down here on the list of things you have to be vigilant about with eczema, in my own personal opinion.

I hope at least one thing I have said will help you and my heart goes out to your little boy.
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Re: How harmful are steroid creams?

Postby Seema on Sat Sep 17, 2011 4:29 am

Hi,

Thank you very much for the advice. That really answers the main question in my mind.

AnnaB, as you said it is affecting his quality of life. Since he cannot sleep properly in the night, he is cranky during the day. He itches a lot during 1 AM - 4 AM and gets cuts everywhere. I am thinking of applying the same mild steroid cream (1%) only on his legs and hands once a day before he goes to sleep and see what happens. Thank you for the advice. I have heard that sometimes kids outgrow eczema as they grow older. How old are your kids? Do they still have eczema?

Shakka, it is good to know that skin thinning problems after using steroid creams for long. I am going to take a look at the research that you suggested.
Yes, we had tried homeopathy few 3-4 months which did not work at all. After that when we did the allergy test, we came to know that he is highly allergic. May be that the reason no alternative medicines are working for him. Even I have read about the 9 months old baby who died of infected eczema which is a very sad story. Thank you very much for the suggestions.

If anybody else has any inputs, please reply. I am new to this forum and very happy to get such a helpful answers.

Thanks,
Seema
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Re: How harmful are steroid creams?

Postby AnnaB on Sat Sep 17, 2011 10:12 pm

Hi Seema
My children are 4 and 7 and have battled eczema all their lives. For their hands we have the strongest steroid there is then a strong steroid for the body and lower strength for the face. We combine this with Protopic and antihistamines. My daughter aged 4 finally has medication to sleep after a very long hard battle. I would not leave a head ache untreated or an infection and have to treat eczema to enable the kids to have a reasonable life.

Anna
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Re: How harmful are steroid creams?

Postby S on Mon Sep 19, 2011 5:57 pm

I would absolutely echo what others have said about prioritizing quality of life above the rest. My parents did this for me when I was young, and I am very grateful. I do this now for myself (though I do go through periods where I think I can go without steroids at times, but I really haven't found anything that works as well). I would suggest monitoring use, and limiting it as much as realistically possible, but don't be so scared of the risks that you avoid them completely.

Many children do outgrow eczema, as you've mentioned. I've read a ton of statistics which vary substantially so I won't post them here. Anecdotally, I've met many, many more people who have said they outgrew their eczema than ones who currently have it!
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Re: How harmful are steroid creams?

Postby Shakka on Tue Sep 20, 2011 4:59 pm

Your response to people's advice has been interesting Seema. You still ask for more input, you still seem keen to avoid using steroid creams for your son's eczema - you tell us you're thinking of using only a mild, over-the-counter hydrocortisone once a day to see what happens and you tell us that even though you were aware of Gloria's terrible story you tried homeopathy for months even though it didn't help your son at all. You still give us a reason why you think alternative medicine isn't working for him, even though you say you have given up hope on alternatives. And you also wish to know if we think kids grow out of it. Your words have certainly made me think about this a lot.

While your reaction may seem bewildering to a lot of people, I understand why you feel like this because I too believed for a long time that there was an alternative treatment for eczema. I needed to believe it because I was so scared of ending up with thin, fragile skin that I had to find a way to avoid that (ironically I never got that problem anyway). As I told you, I spent 30 years holding tight to that belief and I tried every alternative therapy from acupuncture to yoga and everything in between.

Finally it hit me - an alternative is simply nothing if it doesn't work for everyone. Does rubbing an apple on my skin help me? No. So it's not an alternative. But if several people told me that they had got relief by rubbing an apple on their skin, would I have tried it? Yes.
And this is why we come to believe in alternatives - some things (although not apples!) seem to work for some people and we are so desperate to find an answer to our problem that we think it's worth a try too. Why are there so many more alternatives to try now than there used to be in the past? There aren't - if they don't work, they're not an alternative - we just communicate them in a way that more people can access now, so we think there's more.

If you have been brought up to believe that science, medicine and doctors are not to be relied upon then it is no wonder that you have no option but to believe in alternatives, it becomes part of who you are and it is hard to let go of any part of your deeply held beliefs, that's understandable.

But it can be dangerous to your health if nothing works and then the only alternative to medical help can be suffering or even death as we have seen in Gloria's case.

The first time I got eczema herpeticum, I believed that a bit of sunshine would help this nasty outbreak of eczema I was having at the time, so I sat in the sunshine for an hour or so. Later that day, my face began to erupt in blisters - the speed was incredible as I didn't know that I had a virus that was actually being helped to spread fast by the action of the sun. I went to the doctor because I knew then that something was badly, badly wrong. So did the doctor, but they didn't know what it was. I was sent to hospital and by the time I got there half my face was covered in blisters.
I was very, very lucky that hospital doctors recognised this particularly rare strain of the disease and treated me with the correct drugs which stopped it immediately. Indeed it was so rare that they wanted to take photos of me for medical textbooks to teach other doctors how to recognise it - lots of doctors and students were all called in to look at me. It was around my eye and if it had gone into my optic nerve it would have travelled swiftly to my brain and could have killed me. The medicine made me very sick, that was the side effect, but I would rather be sick for a while than dead.
So I am telling you this because I am obviously alive and I know that I could have died if I had stuck to my belief in an alternative. Can you believe that even then I still carried on trying to find one? This shows you how deeply held people's beliefs can be. But the second time I got eczema herpeticum I was banging on the doctor's door the minute I realised I had it - I couldn't deny to myself that my life depended on the medicine.

Having investigated more about the medical treatment of eczema I finally learned to understand that eczema is a malfunction of the body's biology, often exacerbated by outside agents like allergens, etc. By law, the only people who can make any quantifiable effect on human biology are qualified medical professionals, doctors or scientists. Many scientists are working on trying to find an answer for eczema sufferers through research and experimentation, many more than at any time in history - every bit of knowledge they find may provide the key to unlock the answer, but we really can't do anything more than they can by ourselves. How can I make any effect on that malfunctioning eczema gene that I was born with, those T cells that are doing the wrong thing in my body? I can't change them any more than I can physically change the colour of my eyes.

In your son's case, you know he is suffering because you are unable to find an alternative treatment for his eczema. This is not a failing on your part, after all you are trying, but you can't find something if it isn't there. You can help your son's suffering if you take him back to the doctor. You are wise enough to know that the treatment they prescribe won't cure him but it should ease his torment. And that is surely the best thing you can do for your child at this time.

Yes, there are potential side effects of any medical treatment but they are not certain to happen. They are less likely to happen if we follow the advice of doctors who have seen for themselves exactly how to use medicine to minimise the risks. In my case, a doctor will never prescribe me Protopic, even though it can be prescibed to children, because they know that the way it works will almost certainly cause my eczema herpeticum to erupt - I didn't know that before I asked a doctor if I could try Protopic, how could I?

Seema, there is a new, anti-inflammatory treatment for eczema that is scheduled for launch in the first quarter of 2012, it is not a drug and it is not a cure but is has been developed scientifically. There is potential hope for many people with this new treatment but in the meantime we have to rely on steroid creams, used properly to ease our suffering and be aware that this new treatment may not work for everyone - they won't know until thousands of people have used it, but presumably they have enough evidence to show that it can help ease some people's suffering with tolerable side effects, if any, or by law it wouldn't be able to be prescribed by doctors. We won't know, until doctors tell us, who it is suitable for, so we can't demand it. In the end, only science will ever be able to find a cure for eczema, the same way as only science will be able to find a cure for diabetes or heart disease or cancer.

I just wish I could say all this in less words, but it's worth it for me to spend my time writing this if someone who spends 5 or 10 minutes of their time reading it will benefit from it.

And I'm desperately hoping that your little boy will be that person, through your understanding, Seema. I'm reaching out to you in the only way I know how. Please take him to see a doctor again and do exactly what the doctor tells you - if he still can't sleep and is suffering from his eczema as badly you say he is, then go back and ask to see a dermatologist who may prescribe something more effective than an over-the-counter medication.
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Re: How harmful are steroid creams?

Postby AnnaB on Tue Sep 20, 2011 9:37 pm

Shakka
I hope others take time and read you last post, a strong and direct account of your eczema experience. Thank you for sharing with us
Anna
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Re: How harmful are steroid creams?

Postby Khe on Thu Nov 17, 2011 2:41 pm

Hi all,

Your replies have all been very interesting. Im new to this site and really loving it!

I am 30yrs old and have had severe eczema since 6 weeks of age...so all my life.

I have tried just about every natural remedy & spent an absolutely fortune, all to no avail.

As a child, homeopathy worked very well, but it wasnt long term. I have tried it twice as an adult and both times (years apart), my eczema got so bad I had to stop the treatment and quickly revert back to cortisone (internal+external). The homeopaths all say thats its good sign that your eczema worsens during the treatment but they arent suffereing like was And im not one that gives up easily!

So, in a nutshell, I have used Hydrocortison creams on and off most of my life. I use them sparingly, for a few days until the patch clears up. I moisturise intesively every day of my life...most days twice a day. I have been told by many doctors that you have to use really large amounts of the creams, for long periods before you get any negative results.

I have also always been afraid of skin thinning, however surely I would have noticed something by now?? Besides the eczema patches, my skin is really lovely and definately not thinning.

Best of luck to all of you fellow suffers! May the force be with us! hehehe :)
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