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Monday, 2 March 2015

Month 21 Topical Steroid Withdrawal

Hi guys,

I didn't mean to go so long without updating. Here is something I meant to tell you about. A day or so after writing my previous post, I developed pompholyx/ dyshidrotic eczema on my hands and feet. I've had it on my hands once in the past, to which the GP misdiagnosed it and told me I had scabies (lolwot?) and of course it wasn't, though that's a story for another day... It was this bubbly eczema stuff which went away with steroids, but of course that was before my steroid withdrawal so I panicked a bit this time knowing I might be in a bit of a pickle.

I've had to really up the contrast for you to see as it is ridiculously difficult to photograph.




Basically I was given antibiotics, which did their job of clearing up the infection and was told to restart my Ciclosporin to control the rest of my skin and to help the pompholyx and that was that... Although of course it's never that. The pompholyx buggered off but the infection came back a few days after finishing the course. Urgh!!!

I rang up my dermatology nurse on Friday just to let her know it had come back and she wanted me to see someone, however there was no one available to see me and I didn't want to resume the antibiotics so decided to try something different. For the first day or so I did what I normally do and let my skin dry out to cease the infection from spreading. However it was so unbearably painful that I needed to try something. I filled the sink up with water, epsom salts and a few drops of tea tree oil and used a face cloth and just planted it over my whole face. It was fine until it all dried out again.

Later on I tried just putting tea tree oil straight onto a damp face cloth. Never again. Oh my good God! The pain! It's definitely one that needs diluting.

I then came up with the idea of mixing a few drops of tea tree oil in with my white soft paraffin, and sparingly applied it to the infected areas. It left my face a bit red but a bit later it had calmed down my face significantly and I was starting to peel all over. I repeated this all weekend, mass shedding occurred, and low and behold the infection has gone! Hurrah!! I'm still left with some spots and redness and stuff but as it isn't a systematic treatment, I do expect it to take a bit longer. I'm so chuffed though.

From now on I'm going to be adding drops of tea tree oil to my emollient when I need to use it.

Three cheers for tea tree oil!

Also apologies for those who have emailed me and gotten no reply, I've been pretty much AWOL and moping around feeling sorry for myself. Hopefully I shall be back on form soon.


7 comments :

  1. Hi Jenny! I'm sorry your hands are sore (ouch) but it's nice to know that your face's infection stopped!!! :D

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  2. Oh and btw I don't know if you recieve notifications for new comments but in case you don't, I left a comment about a doctor that can help eczema in your last post. I hope you see it! Good luck

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  3. This comment has been removed by the author.

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  4. i think i've had those bumps near the base of your thumb, didn't know what they were at the time, i thought it was a reaction to the greasy ointment i was using, they itched like mad, never had them on the palms of my hands which is where nhs choice page says you get them, but they were dotted up and around some of my fingers. think adding tea tree oil to your paraffin is good idea as you can make it stronger or weaker, cedarwood essential oil is supposed to be quite good too. i remember putting calendula oil on my face once after reading about how healing it was, made my face more red! could have been reaction to the carrier oil though. i did consider the chinese medicine route but put off by a news story that some of the herbal creams contained really strong steroid, and the dried herbs had damaged people's kidneys because they were contaminated, but you get so desperate you feel like trying anything.

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  5. Jenny,

    So sorry to see that you are having such a tough time with your eczema. I live in California and know there is extensive research on new medications for eczema that have shown dramatic results in patients like yourself whom topical steroids just aren't working for. You should look up Dupilumab and see if they are doing any studies in your area for it.

    Hope it helps!

    Jordan

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  6. Maybe you could try adding a very small amount of tea tree oil to the emollient as a way to prevent infection? Or you could try several different oils and rotate them so you don't get sensitive. I've heard that lavender is good for infection. So maybe tea tree one week, lavender the next? It might help keep infection away. Possibly it may only need one application a week? Apple cider vinegar is also good for infection but it is stingy so I would use well diluted. Good luck x, (Louise, Josh's mum)

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  7. hey, ive just come across your blog, i would like to let you know that i have exctly the same problem, and if there is something i have learnt, this is a illnes from the inside to the outside, eat clean, a lot of vegetables, whole cereals, and food with low levels of histamin,(visit a naturist doctor to do a detox diet)drink water, check your vitamin d levels, and love yourself. it is posssible put this illness under control.
    never lose the hope.

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