Frankz (Belgium) at allergieplein.nl


#1

This is a heavy severe story, and similar to Confound at medhelp.org

http://www.allergieplein.nl/forum/mijn-verhaal-zware-atopische-eczeem-t120522.html
Translated to English :

[quote]
Frankz
Title: My Story - Severe Atopic Eczema
Message Posted: Wed Feb 16, 2013 4:33 pm

Hello everyone, I was just a little googling and was thus up on this forum. I introduce myself. Am a young man of 21 living in Belgium near Brussels. Have all my life (after birth), asthma and eczema. In my childhood I mostly had eczema on the most common places such as the hands, arm folds, knee pleats. Since my 10 years I saved up for a long time remained in the area of ??eczema. But when I turned 18, it all came back suddenly, a living hell! I plan to share my story with you and write down here, as “primeur” You can say that lol. From beginning to end with my personal treatment.

When I turned 18, my eczema came back slightly at the sides of my face it all started. It seemed nothing serious, just some flaky and dryness. After a time there were little scabs, I thought then that it would go away if I would apply a a fat Nivea cream, but without any results. As time passed, it was getting worse and worse. I went first went to a local doctor, he simply did not take me seriously enough that he did not know how a case as I had to deal. However, he has kept me well on a leash and have him nicely to pay each time € 50 per visit. I was after months of “treatment” with one ointment which had no effect and a box of pills not meant for me were sent out the door and there was me ‘good luck’ wished. At this time my face was already bad shape, bright red of the eczema, dehydrated and small scabs here and there.

After that, I made an appointment at the University Hospital of Jette (Brussels). I was born there and have been treated earlier for eczema, acne (with roaccutane) and asthma so I had a good feeling and thought that the doctors here I would offer a viable solution. At this time I also had a lot of stress (because of eczema), I slept very badly and I barely went outside home because my face was so bad.

The dermatologist I got there, prescribed me cortisone + moisturizing cream that I had to apply. But it hardly helped, my face was red and it was getting worse. The next times I visited the dermatologist, I got another cortisone because the former had little or no effect. Meanwhile, my face was red and dry / flaky gone to red and crusty. Every time I went to the doctor, I felt as if she did not believe me back, she thought I was not lubricated enough, she thought I was not lubricating at all, there simply was no trust between me and the doctor :confused: . According to the doctor it was IMPOSSIBLE that the ointment did not work, it HAD to work, she said. But that was in the reality not at all the case. I also got the feeling that I had tried all possible ointments and that there was simply no other ointment anymore that could make my life bearable again (mental / social, I was really on the ground). At that moment the doctor went outside and I heard her say to a colleague, “I am completely desperate, I tried everything.” I found it outrageous to hear that after a year’s treatment. Whenever I was sent home with another cortisone and moisturizing cream. I was crazy. I got the ‘best’ result with Elecon. I then had suffered from a dried red facial skin, with yellow scabs and sores that constantly oozed a yellow liquid that quickly dried up and caused the crust to get bigger and bigger, swollen and sometimes glued eyes after waking up. This period was a real hell for me, I was afraid to sleep because my face was twice as bad when waking up (because of lying/sleeping on the wounds). I never came outside (dropped out of school because of this) out of shame, I did not want the people I knew to saw me like this.
Elecon more or less blocked the scabs so I continued to lubricate it every day for six months. It was mopping with the tap open!

Now comes the “good portion” :stuck_out_tongue: . After lubricating with Elecon for too long, it had less and less effect. Suddenly it all went downhill. My face had never looked like this, I was almost unrecognizable. There were yellow / orange infected scabs on my face. This covered my nose and skin under the eyes (cheek) also sat around the mouth, around the eyes, eyebrows and in the extreme sides of my face (the ears). I could barely move my eyes / mouth, I found it disgusting to look myself in the mirror. I then decided with my parents that we would find another hospital because Jette gave little / no good treatment. My parents went with me on the evening of March 16, 2012 to the emergency room of the Hospital of Leuven (a turning point in my life)! I wanted that they took me up in t he hospital, because I was tired of being sent home with a new ointment every time. All this happened during the bus crash in Switzerland whereby twenty Leuven children were killed and so they could not take me up because everything was reserved to accommodate the injured children (which was understandable). The emergency dermatologist was very professional, I noticed this right away. It was a world of difference compared to the hospital in Jette (where I was all my life to go). The dermatologist told me that I had heavily infected atopic eczema, and in consultation with other doctors immediately proposed a fully developed treatment plan to me, it was ridiculous, I thought there was nothing more to do. The ensuing weeks it was much better, the great crust was gone. Here and there there were some yellow crusts but it was an improvement. I got a custom cortisone ointment which worked better than any other ointments that I had ever tried. The doctors in Leuven really listen to their patients and know what they are doing. But my face did stay red and the doctors came to the conclusion that it could not be resolved, the redness with ointments. I then received Neoral prescribed. 2x 100mg per day. The next three months were fantastic. Eczema almost disappeared (redness away and skin scales 50/50). I could for the first time since a long time back with pride outside, it was a real life-changer. I still had to apply a cortisone every three days to stop an outbreak and a daily moisturizing cream (cold cream + urea 5%). In October / November they switched me from the custom cortisone ointment to protopic (which I still use every 3-4 days). This ointment gave me an even better results than the previous one and I started to slowly reduce Neoral with success.

Today I am back at school (after two years to have missed), I am very motivated to everyday life again fly xD! The eczema is still there, but it is under control and it is livable. I can go outside without worring me, my stress is greatly reduced, sleep better and I feel good mentally :smiley: .

So this was my story, I hope I’m not too much repetition in cases xD, it’s the first time I tell / write down. My point above saying that there is indeed hope and that it can still be fine with your eczema, how bad it might be! The dermatologists at UZ Leuven have really improved my life, the way they work is fantastic. A world of difference with Jette.

Will just below the ointments write down that I have to use:
Hospital UZ Jette: These treatments / ointments do not work for me, just for the record!
Hydrating: Cold cream + cetomacrogol (I eventually turned out to be allergic to this one)
Greasy ointment;
Pure vaseline
Cortisones;
Advantan
Emouvate
Betnelan
Locoid
Elecon
Mycolog
Not Cortiones;
Paraffine + Vaseline
Protopic 0.1% - Was prescribed to me when I had acute eczema, in Leuven they explained to me that Protopic has no effect on very acute eczema and should not be used for this purpose.
Pills: Xyzal

Leuven: This treatment DID work!
Yellow scabs on face:
Compresses wet with sterile water> Hold it a quarter of a hour on scabs to gradually reduce the crusts. Do NOT wipe / scratch crusts> causes open sores> risk of relapse.
Salicylic acid + valerate> a custom ointment> on the yellow crusts, which loosens crusts and accelerates healing.
Eczema:
Cutivate> 2x / day for one week (then 1x / day for 1 week) - on the rest of face> worked very well at that time

If the yellow crusts had disappeared completely;
Red face + flakiness;
Moisturizing oily cream: Cold cream + 5% urea
Cortisone face: compound ointment
Cortisone body: composite cream: betamethasone

Ointments were not enough, according to doctors / desired effect and noticed that my social life here is still under heavy suffering;
Neoral treatment initiated> 2 x 100mg / day based on weight.
3 Months> 2 x 100mg / day
After 3 months> Phasing with 25mg every two weeks.
Moisturizing cream> 2x / day: Cold cream + urea 5%
Cortisone face> if necessary:
Cortisone body> If necessary: Betamethasone valerate

Recently I switched to Protopic 0.1% and 0.03% with success (belongs to the same group of drugs as Neoral)! The eczema stays away longer than with the custom ointment. I still lubricate daily with the moisturizer and I’m slowly reducing Neoral, it’s now 2x 25 mg / day. My face looks normal again (white / normal skin color), not red: p, not dried etc. :lol:

Hopefully I can help other people with this post that there is so much to be as I once was. But do not attempt on their own start explained above treatments! Always with a doctor! Neoral is a very heavy product which counteracts inflammation with many adverse side effects (is also used in people who have had a kidney transplant in order not to bump the kidney, very heavy product so!). But it has stabilized my eczema.

So that’s it :stuck_out_tongue: if you have it all the way up here kept full, congratulations and thanks :stuck_out_tongue: !

If you have questions, post them here and I will try to answer, this forum will hold for a while in the eye!

With kind regards & speedy recovery to all people with eczema problems!
Frankz[/quote]

The oozing yellow crusts and worsening may be caused by topical steroid withdrawal, and thus may be different than the unknown disease that we have.