Monday, 6 July 2015

Topical Steroid Withdrawal Month 25.5

Hey guys,

I'm now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I'm still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.

About that though, the heat I mean. I've done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn't even get dressed because my skin was that awful. This year, I'm sweating and it's still horrible and my face and neck have gone rashy but it isn't anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven't used the fan to help cool down. Shane has, because it's been ridiculously hot but I didn't feel I NEEDED to use it like I previously did. Especially on night times. Hurray!

I have also managed to leave the house sans tights - Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.

In terms of medication, my Ciclosporin has been upped to 350mg a day - 200mg in the morning and 150mg at night. It hasn't made much of a difference for my face but then I have seen some people say it loses efficacy over time. I've been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I'll have been on this particular course for a year.

I am slightly concerned with it at the moment though. I've never witnessed it in the past, but over the year since I've been taking it I've gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I've slowly gone up to 10 stone and having recently upped the dose again (May 2015) I'm hovering around the 10 and a half stone mark. I'm absolutely gutted. I feel and look disgusting.

I'm still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can't even see my weight gain but that's because it has all gone to my stomach area so I can hide it to an extent. I've been experiencing a lot of bloating lately too. I'm supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.

I've already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?

Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven't had a reply. Not sure what more I can do on that front.

How is everyone else doing?



8 comments :

  1. Hi Jenny,

    I wrote a long message about the Dupilumab trial, but not sure if it went through, so apologies if you get a duplicate message!

    I am from the UK and had a screening visit for dupilumab back in April 2015, but they soon contacted me back to say they have stopped recruiting for the Phase III double blind trial in the UK but may contact me in the future for their follow-up study which I believe is open-label.

    Anyway, if you go to clinicaltrial.gov and do a search for 'dupilumab' it will come up with a list of all the trials which are currently going on with the drug. From what I could see, they have stopped recruiting for adult atopic dermatitis trials (could be why the derms aren't pushing it at the moment). I didn't go through my GP and contacted the site directly who invited me for the assessment. The site will contact your GP to seek their approval for your participation in the trial etc...

    Sorry if you already knew all this, but just in case you didn't I thought I'd let you know about the website.

    Well done on getting past 2 years :-)

    Manpreet x

    ReplyDelete
  2. Thanks so much for your comment Manpreet. I looked at it through the NHS website which said at the time that they were recruiting within the UK so perhaps it hadn't been updated or something. Just looked at 2 of the trials on the site you sent which both say 'recruiting' but when you actually look on the locations UK isn't one of them. Damnit. No idea what I'm going to do when I have to come off Ciclosporin next month as I'll probably just get bullied into a corner with steroids. Unless there are any other trials in place for other promising drugs.

    I could just kick myself, very hard, for not taking my derm up on the offer in Jan 2014. Silly Jenny.

    How far in are you?

    x

    ReplyDelete
    Replies
    1. I am 18 months in - plodding along, face and scalp are the worst, but I've been pretty much the same since month 9 i.e., rough facial skin with wrinkly eyes and redness on/off depending on what I've eaten.

      Stay strong, you've come so far :-)

      x

      Delete
  3. hi jenny!

    thanks for documenting your eczema journey!! i really hope dupilumab finds its way into your hands and hopefully it works. i've been using cellcept and it hasn't worked to the degree that i've been wanting it to, but reading about the other immunosuppressants you've been on makes me so wary): so thank you for sharing it.

    sending you well wishes and lots of love

    ReplyDelete
  4. Hi Jenny. Delighted to hear that you are not suffering with the heat as badly as before, do you think maybe the hives were mostly down to the steroid creams?
    I was wondering- and I'm so sorry if this is annoying- but do you take omega 3? I've started taking that and find it quite helpful. Also, are you still taking the vitamin d and iron supplements?
    Hang in there Jenny, sounds like you've come on leaps and bounds- just think how you'll be this time next year- it might be worth giving the plant vegan diet another try. Also, don't be too hard on yourself regarding not taking the previous derm up on the d trial in 2014- your body may not have been ready for it then. Take care Jenny, and most importantly, be kind too yourself :)

    ReplyDelete
  5. hi Jenny,

    I lives in HK, Sai Kung (humid spot). I had serious skin problem in childhood. But occassional eczema when grown up. But this year, since March 2015, i had it from head to toe, could sleep at night. Antihistamine helped, but it would come back.

    Recently, a friend brought me a bottle of "fruit enzyme" drink. I have taken it for 4-5 days after stopped taking the antihistamine. My skin has improved significantly, smooth and moist. I have just started, not sure how well it will go. But the effect is obvious. Not sure if it would work with your case. The drink I've got is one from Taiwan called "Man Tai": http://www.bioenergy.com.tw/

    I found a FB page, a lady making her own enzyme to cure her eczema:
    https://www.facebook.com/pages/Every-Day-Enzyme/213679088775290


    I came across your page here, while googling for "L Lysine eczema", when my other friend suggested Lysine for me.

    Hope this is useful to you.

    Cheers
    Nick

    ReplyDelete

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