If you have eczema, you're far from being alone. This is where you can hear other patients' experiences of living with and managing eczema. If you’d like to share your own story, please get in touch with us!
Topical prescriptions treatments
It really has worked!
I was diagnosed with eczema in my late teens (am now 46) over the years I’ve used several different creams /lotions and had times when it’s cleared up completely then comes back suddenly. In the last year I’ve gone into menopause after having a hysterectomy a few years back ... my GP prescribed me Cetraben last year and since then I’ve used it every day after showering & bathing and I’ve seen a vast improvement. My skin is soft again with no flaking ... I even use it on my face feet & hands and its fab!
Elidel hasn't worked for me
I have been disappointed by the results of Elidel. I have had eczema for most of my life and it covers most of my body. Most of my eczema is now mostly under control except for my face. At the end of 2002, I had started using Elidel on my face. I have now used it for 6 weeks and I could not see any improvement at all. I had to go back to steroid creams during those flare ups. Anyone had the same experience as me? I would like to try Protopic but unfortunately it is not available in my country (New Zealand).
Kiang, Wellington, New Zealand
My experiences with Elidel
I thought I would let you know how I got on with Elidel. I used it for five days on my face (as prescribed by the pharmacist) and was not particularly impressed with the results. Prior to this I had been using Elocon cream which had cleared my eczema by about 85% but it had started to return. I would say Elidel helped by about 10-15% but did not clear it and it has now returned yet again. During the time I used Elidel my skin was still very dry, itchy and flaky and its overall appearance was not vastly improved. It is advised not to expose skin to the sun for any length of time while using the cream and a sunscreen must be used.
Overall I would possibly use Elidel again if my eczema was very mild but unfortunately have had to return to Elocon cream for a quick fix.
Hilary, London, UK
Update on Elidel - I am so happy with Elidel
I am always careful now when I want to tell about how good my son looks since one month because I still fear that it will begin all over again but for now, I think he will manage (I cross my fingers). Since Beau was two months, he had eczema with severe scratching during night time. Every night was a nightmare of scratching, crying... we hardly slept three hours a night. I did everything I could in every part of our life; changes of products for everything, liquidation of food etc... but I must say that the only real change came together with the introduction of Elidel about a month ago. Just the day after I used it for the first time (he slept right through the night, we were amazed !), he got the chicken pox. He was all over and so I had to stop treating him with Elidel. Then I escaped to Tunisia with him for 11 days to give him a good climate (because in Belgium it changes every day). Every morning, we went to the beach till it was time to take a nap. Because he didn't like the sea too much, I filled a bucket 40 times a day to throw all over his hands and feet. Together with the new introduction of Elidel, he came home without any sign of eczema. Of course, I take care of all the other aspects just like before, but only this has made my life so different you can't imagine. Sleeping with my husband instead of my baby is like heaven especially because we know Beau sleeps very well too in his own bed, Finally I called my doctor who prescribed me Elidel and I told her that if she would stand in front of me, I would hug her about an hour. I will not say that he is totally OK, but he sleeps, we sleep and that is a gift ! I enjoy reading your website, I feel what the other mothers are feeling and it is terrible. I don't know if Elidel will help the others but it is really a miracle if you are a lucky one.
Cindy, Antwerp, Belgium
Elidel has helped me
When I was about 12 I noticed a rash forming on my upper leg. Immediately my doctor said I had ringworm without even testing and started prescribing medication. Another doctor informed me it was an allergy and to try eliminating things form my diet or laundry etc. I have tried calamine lotions, things for moisturizing any item I could get my hands on. I live in Maine and every winter it would get like 50 times worse. With wind chills reaching -50 to -60F. I am almost 25 and last month my new doctor looked at it and said it was eczema and prescribed Elidel. She gave me a sample and it started to work overnight. And now I see the skin the way it is supposed to be. It is slightly scarred my doctor said in a few years it will get less and less visible. Now I can finally wear a bathing suit and shorts or even a skirt and not worry about wearing dark coloured pantyhose to cover it up. I must say Thank You to the makers of the Elidel.
Katrina, Maine, USA
Don't use steroids
I have been having eczema for many years now and went through all different kinds of creams and other medications. Nothing helped except for temporary relief. And I started having some serious side effects from steroid creams. No doctors explained to me what was going to happen If I keep using steroid creams. But I discovered eliminating dairy and wheat from your diet helps a lot. And I have been taking bath with dead sea salt, oatmeal base bath products and bumble bee vitamin E oil. After tower dry, I put on Caswell Massey body lotion on my body. By doing all these, I can manage those horrible flare-ups. I don't use steroid anymore. I use Elidel when I get flare-ups. It is less effective but it is safe. I strongly don't recommend any steroid creams to anybody.
Suzie, Chicago, USA
Elidel didn't work for me but Protopic did
I am 22 yrs old, and I have suffered with eczema for about 3 years now. My dermatologist had me try Elidel. I was very excited to try it, but it did absolutely NOTHING for me!!! She then put me on Protopic and told me it works better for adults with moderate eczema than Elidel because Protopic is a little bit stronger. It has helped, but only a little bit.
Pete, Las Vegas, USA
Check the facts before ditching it!
We have been using Elidel off and on for several months on both of our children to treat their eczema. Our doctor told us to apply the cream as soon as the eczema begins to appear, and before it flares. This works wonderfully, as does applying it for a few days longer after the rash has gone away. We picked up this tip from a dermatologist who said it was important to do this to continue to suppress the immune system and control the eczema. We are not scared at all about the recent cancer warnings. After doing some research, we found that this data about increasing cancer risks coming with increasing exposure is coming from monkey trials using an experimental oral formulation. Not the topical cream. The monkeys began to develop some lymphomas after receiving 30 times the maximum human dose. This amount would almost be impossible to obtain by using a cream on the skin. The skin cancers being reported as related to Elidel are not related at all. They are not the types of cancer that are seen with immune suppression. By the way, those of you who are dumping Elidel to go back to steroids, you are doing no good. What has not been reported is that steroids are immune suppressers just like Elidel. Only, they suppress many more types of skin cells that Elidel does not target. Not to mention all of those dreaded steroid side effects like atrophy and spider veins. Be informed and don't just believe what you read from the media. Check out the American Academy of Dermatology and National Eczema Association websites. These are the experts.
Melissa, Johnson City, USA
Elidel is safe and works
My daughter had a lot of allergies when she was born. She has slowly outgrown most of her allergies, but her eczema is steadily getting worse. We have been to allergists and dermatologists who suggested restricting her diet, applying ice to relieve the itchiness and prescribing unbelievably expensive creams and soaps. The last straw was when her dermatologist injected her with steroids but it still didn't do her any good. I have resorted to covering her fingers with gauze bandages to prevent them from getting dirty in school, to no avail. Finally I found a peadiatric dermatologist who talked a lot of sense. The first step she said was acceptance. My daughter's condition will not go away, it is something we need to know how to manage. Each child reacts differently to medication, the trick is finding what works for us. She lifted the restrictions on her diet and prescribed a different course of medications. She told me to try using Elidel first and warned me my daughter will feel a sting when it is applied. For the mild flare ups, Elidel worked fine. The worst ones, it didn't. For these she prescribed Mometasone (Elica) ointment. When it is really bad, we wrap the affected areas with plastic wrap at bedtime after applying the ointment. It worked fine but I was advised to stop it as soon as I see an improvement to prevent overexposing her to steroids. I also do the same with Elidel. After reading the article of one of the moms in this page, I will try her technique and extend the use of Elidel after it has disappeared to prevent it from coming back soon after. My daughter's maintenance, when she is off Elidel and Elica, is petroleum jelly, her bath soap is Oilatum Soap. It is working for her, I just need to be vigilant and watch out when flare ups are starting. I hope this helps out other moms with the same problem. Incidentally, it was our doctor who told us about the bad press regarding Elidel. She assured us that Elidel is safe, in fact, she is using it herself. She said, for it to cause cancer, a significant amount has to be absorbed by the body which is impossible if it is only applied to the skin.
Mapet, Quezon City, Philippines
Protopic helped me - Cheryl, San Francisco, USA
In 2002 I began struggling with a mysterious skin itching redness and chapping around my eye area and a redness burning at the corner of my mouth that was getting to be crusty looking. It made me look older and I was becoming depressed at my aging appearance at 41. At first I was prescribed cortisone ointment but that didn't help. Then a new doctor at Kaiser told me it was eczema and recommended the newest ointment out on the market, Prozac. Just in the nick of time the miracle cure was there for me. I tried it and it actually showed signs of healing within 24 hours! This was after 8 months of no real results with other cortisone treatments. Within 3 days it was completely gone and my skin looked great! Three years later, I find I no longer need Protopic but only very rarely for very minor flare-ups every 6 months. When I apply the ointment, the flare-up goes away within hours. When I read about the cancer risk recently I thought it was worth the risk. I don't care if there is a small cancer risk because we risk our lives every day in a dangerous world. Eczema was very depressing to have and I was relieved there was something to get rid of it almost immediately.
Cheryl, San Francisco, USA
Protopic as a treatment for eczema is excellent
Protopic works excellently for me. For 6 months my eczema had been growing worse and was really getting me down and stressed out, and generally affecting my life in a big way. When I was prescribed Protopic I was dubious about using it because of the unknown long-term effects, but I was also desperate to have a normal face again. My eczema cleared up within two days on my face, arms and hand. I could not believe it. I did get a spotty sort of rash for one to two days which I think was a side effect but it soon went away. I am finding, though, that I have to keep using it. I don't know if anyone else is having to do this? I am quite worried about the long-term effects of Protopic ... but as a treatment for eczema, well it's just been excellent for me.
Lindsay, Bristol, UK
Protopic and steroids can work if used properly
Hello, I have had atopic eczema since six months old. I previously had asthma and hay fever which I have now grown out of. I would like to say to people do not be lulled into a false sense of security with Chinese or any other herbal medicine. Remember herbs are very potent and natural does not equal "safe" Also don't rule things such as steroids or Protopic as these can be very effective when used properly by someone who knows what they're doing. Any medicine is dangerous if misused. Whatever path you choose be it conventional or complementary, above all quality of life is paramount.
Clio, London, UK
Protopic - double edged sword
My daughter who is 16 years old has had eczema for 14 years. The past four years she has been using Protopic and it works wonders. She had severe eczema and allergies and asthma. I am wondering if there is a connection between her always getting boils, infected hair follicles and staph infections related to Protopic. She has also had had herpes virus. I think the side effects of Protopic are like a double edged sword. She cannot live without the cream and she uses it every day. If anyone else has had these problems please let me know.
Kim, Hamilton, USA
I've used protopic for my facial eczema
I have suffered with eczema for 35 yrs and my dermatologist prescribed Protopic 4 yrs ago as I seem to have tried every treatment going. I have facial eczema which flairs up due to allergies (normally pets, dust, etc), and I only use Protopic ointment in an evening as it tends to burn my skin and itch like crazy. I can't get over the fact though, that I scratch my face like crazy but when I wake up in the morning is cleared! I don't tend to have to use it very often now as my skin is a lot clearer - touch wood.
Emma, Preston, UK