Friday, 16 January 2015

Topical Steroid Withdrawal Month 19.5

Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn't getting better so I decided to use it again the other day as I need to be able to work. I'm pleased to say doing this has helped to kick-start it and it is working again.

My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.

She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.

I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren't trialing it as of yet but I would be a suitable candidate if it came about.

When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren't working for me any more and to my complete surprise she said "Yes, that can happen." What?! This is the same lady who said the complete opposite last time I saw her. No doubt she'll say differently again next time I see her but even still!

I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.

Happy days :)

Here's a silly unflattering pic I just took to showcase the paleness:

For reference this was me the other day:

1 comment :

  1. Hi Jenny, my name is Jas. I just came across your blog and wanted to briefly share my story. My son has had eczema since he was 1, he is 9 now. Last summer I was in England and by luck met a lady who makes and sells an eczema cream. I was skeptical, as I usually am, but for some reason decided to try it. I’m so glad I did. The cream is made of natural high grade ingredients – shea butter, coconut oil, sea chalk, rooibos tea and more. It has been 5 months since I have been using this cream on my son … 5 months with no steroids! Within the first 7 days, his eczema mostly cleared up. Within 2 weeks it had cleared in his stubborn areas. I could not be happier that he is no longer using the steroid creams. My fingers are crossed that this will continue! Not sure if you might be interested in trying this, but I would be happy to get some to you … for me it was worth trying. We have tried so many things, all to no avail. Finally we found something that works. I have passed this on to a few friends who were also struggling and it has made an improvement so I have become a believer. You can email if you like for more information -