Sunday, 29 March 2015

Month 22 Steroid Withdrawal

I am nearing my 2 years of withdrawal and still not done yet. I have been taking Vitamin D and Vitamin C with Iron tablets for around 2 months now but things still aren't running smoothly. I eat a mostly vegan diet with plenty of fruit and veg but there is always room for improvement. I'm waiting for summer to try going mostly raw vegan again as that is when all the nice fruits will be around.

We went for a little getaway on the 16th to the Lake District. I never in a million years thought I'd ever have the enthusiasm and motivation for going on a walking holiday, but I guess these things change. Anyway, no sooner had we arrived I could see the tell-tale signs of infection emerging. For goodness sake. I'm not allowed to enjoy anything am I?! What was more annoying was that we were blessed with dry, sunny days which were perfect for going for walks, but no, I ended up being mostly confined to the cottage. It was a stunningly twee little place though so I was glad we were able to make the most of staying there.

I did however force myself to go out a few times, even though I looked like the undead. My camera has been lovely to me though and you can't even see that there is anything awry.

I used my drying out and tea tree oil method but it didn't seem to work as amazingly as it had before, though it did appear to clear the majority. I booked in an appointment to see a doctor on the Thursday evening of our return who prescribed me antibiotics as a standby option. I can tell you, I'm bloody glad I did. Overnight it returned with a mean vengeance. Everything was yellow, swollen and I felt feverish and yuck. So I'm back on the unwanted antibiotics.

The following Monday I had a follow-up appointment with my derm nurse at the hospital. She essentially told me that she was drawing blanks with what other treatments I could have as I have tried them all. Ciclosporin isn't working as effectively as it should be any more and our goals of treatment have changed anyway, seeing as I keep having constant infections again. She wants me to push the idea of biologic treatment and has issued me a fast-track appointment with my consultant derm. I wasn't supposed to see her until August but now have an appointment for early May. Biologics are new in terms of treatment for AD individuals, and I was actually given the opportunity to go on them over a year ago, but back then I was fed up of being a guinea pig. I could kick myself now, had I known I would regress again. Ho hum.

But yes, unless things get remarkably better with my natural solutions, it looks like I may be forced to take that route. I have been doing a lot of reading and research into Dupilumab, a biologic which is currently being trialed, and have seen good stuff so far.

So yep, this is where I'm currently at.

Oh, and it hardly seems worth telling because it was so minuscule but I also had a small bout of herpeticum earlier this week that originated around my eye. Fingers crossed it is now lessening in severity as after a few days of treatment it disappears. At least something is going right!

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.