Thursday, 3 September 2015

CICLOSPORIN UPDATE || 27.08.15

Hello again!
I thought I'd do an update on this blog now I finally have the chance (lol, looking at me just 2 months ago - never would I have known that I'd feel SO busy now)

My life is back.

After just around 8 weeks on my current treatment, I have got myself a new job, gone out with my friends, got drunk, met new people, eaten pizza - all the things a 23 year old SHOULD be doing, and I've never felt happiness quite like it (bless me, ay).

Just briefly to discuss my treatment. I started off on Ciclosporin, 100mg, one tablet, twice a day (morning and night). The symptoms, horror stories and information about this drug can be somewhat quite frightening, hence why I was so scared to go on the drug in the first place. However, I can't begin to describe the relief it has given me. When I wake up I no longer feel I need to rush to the shower/bath to wash and slather heavy duty creams all over me, some days I could quite happily go without a shower and lounge around in my PJ's all day - no bother. Even before I quit steroids, I would be so uncomfortable all the time, it was miserable! Every item of clothing seemed to aggravate me, all I wanted was to be stroked or cuddled just to take my mind off the discomfort.

NOW HOWEVER, my skin is silky smooth - something I haven't felt for a good 5 years now. I'd say it took my body around 4-5 weeks to stop flaring completely, during that time my legs were still pretty bad, my arm creases would randomly flare, as well as my fingers/hands/feet. At 8 weeks in, the only thing that bothers me on occasion (usually after a long day at work or a hot day where my feet have been in shoes all day), my ankles can become slightly inflamed/uncomfortable and itchy, but usually by the next day it's calmed down. I was so happy during the beginning stages - just to be able to wear my normal clothes again, I would roam around town or go on nights out with my legs out, just because I could (even if they were still an alarming purple/red colour). The most bizarre thing, is slowly but surely I have began to use normal shower gels, fragranced face moisturisers, makeup, perfumes, I can wear my watch on my wrist again, I've been eating dairy, wheat, alcohol -  all the bad stuff (just to kind of test my body I guess.. and because why the hell not seeing as I've gone without for so long), and I'm COMPLETELY fine. I just get the odd spot. (fucking big deal, right?)

The reason I'm writing this post is mainly to mark my progress up to this point. I went to the dermatologist yesterday and he's very pleased with my progress, he's now prescribed me to go down from 100mg twice a day, to 75mg twice a day. I couldn't be more excited, not gonna lie.. I say excited purely because 1) this seems such a gradual decrease and 2) he's confident enough to start weaning me off the higher dose, ALREADY - after just 8 weeks! My dermatologist has mentioned to me all the things that would be put in to place if I ended up going really bad again (trust me, my anxiety about this is sky high, as you can imagine). This includes different medications, or upping the dose to 100mg again (I can do this for up to a year, then I go on the different drug), however he believes at the rate I'm improving, he's hoping I'll get a good break - and in eczema sufferer terms this means a good 6 months to a year or two. EEE.

I have included some photos (unedited, I really am just as pale/translucent as I appear), below of my skin up to this point. Its quite crazy to look back at my older photos from a few months ago in comparison, it almost makes me feel sick to my stomach with fear and anxiety at how bad it really was! I will be writing another post, including photos at how I have improved in another 12 weeks time (My dermatologist wants to see me in 12 weeks now instead of 8, I can only see this as a good thing!) In terms of side effects, I'd say the only thing I have suffered from is increased body hair, my arms are, if I was to be completely honest, BLOODY HAIRY - for a female, although they always have been really I guess, plus I have light body hair, so no big deal for me personally. I also still burp everytime the medication seems to hit my stomach (lol), and bizarrely over the past couple weeks I have noticed my hair has began to lighten in colour - almost as though I have had random blonde highlights put through my fringe/fronts/underneath parts of my hair. As you can imagine these are the least of my worries right now. It's so good to finally moan about being at work all day, having to paint my nails or put petrol in my car - normal things.
If anyone has any questions for me about the medication or anything they feel I haven't covered in this post, just let me know :) x

8 weeks into Ciclosporin 100mg twice a day.





Snapshot of life since treatment.




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