Thursday, 29 January 2015

Month 20 Topical Steroid Withdrawal

Hey guys,

Of course everything has gone downhill again. As it always seemingly does with me.

OK, so as of last Friday (23rd Jan) I could feel the itchiness around my nose/ mouth returning. This of course then reared its ugly head and manifested itself as the infection of the previous 2 months. I have no idea why it always starts around my nose/mouth area. We've done countless swabs and there just isn't any rhyme or reason for it to occur. One of those many mysteries. So yes, back on the god damn antibiotics.

However, I also feel there may be a connection between these infections and the Ciclosporin intake. When I took Ciclo in the past, in the very first stages of my withdrawal, I kept getting countless infections, including MRSA, which was never an issue prior to this. For that reason I decided to stop it once again in August 2013 to give my body a break. Yet even still, the infections never manifested the same way each time as they do now. Although when I moved to Leeds everything flared up again and so if you have been reading my blog for a while you'll know I've been backwards and forwards with all this and had to go back onto it again for the billionth time.

Most recently I've noticed with these infections is that it seems to be a week in to taking the full dose of Ciclo that my skin will clear up nicely but days later these infections develop. I think it may be finally time to call it a day after this round, providing my skin is tolerable enough after this bout of infection to carry on without involvement, unlike these previous months where I have been left in a worsened state.

I have no decent photos to show you of my most recent episode but I can assure you it has been just like the others, weeping yellow crusts, pain, soreness, extreme itching and all that jazz.

I do however have this picture I took today where you can see I have some more hair growth. This always makes me happy. One day I may even restore my hair to its thickness I had when I was 12, but I would be equally pleased with having my hair circa 2009.

You can see that the antibiotics are doing their job and beating the infection. I am now left with areas of redness mimicking that of a rash, but this is the healing skin before the peeling stage. I love that stage even if it is messy and means I have to watch what I wear and the trail I leave behind me.

In other news, I received a phone call from my derm nurse whilst I was initially typing out this post to see how I was getting on. I decided to enquire about my blood test results that I had taken nearly a fortnight ago. My iron levels were low but still in normal range - I had a reading of 10 and the normal ranges are 5-300 so it could probably do with some boosting. She couldn't however find the Vitamin D test so I might have to have that done again.

Now, with my IgE testing this is where it gets somewhat interesting. She said my results fell into the bracket of "weak positive" but couldn't tell me much more than that. Last time I had my levels tested I was well above the 5000 range but I have no idea how that even equates and what the unit of measurement for that is?

I did however find a site that stated a grading system for allergen ige levels:
0 being negative at a reading of <0.35KUA/L
1 being weak positive at a reading of 0.35-0.7KUA/L
all the way up to the highest at grade 6.

This kind of makes sense to me because when I was very first tested in 2009 I was giving ratings - 5/6 dust mites and 4/6 for cat dander which  seems to reflect the graded system. I want to know how my new reading equates to the "thousandth" measurement and what it would be now if I'm now a 'weak positive'.

I can only evaluate from this set of results that my IgE levels have diminished since going into steroid withdrawal and for that I am ecstatic!

Sorry it's a long winded one today and I must say, I thank each and every one of you for your kind advice and words. Maybe one day I will see the light but for now I plod on and get through this how I can.

Happy healing!

P.S. my blog is 2 years old now!

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:

Thursday, 8 January 2015

Happy New Year Red Skin Friends!

Wow. It has been an entire month since I last updated this blog.

Let's start by saying Happy New Year everyone! I hope this year will be good to all of us going through topical steroid withdrawal, and to those who haven't started the journey yet, I hope this is the year you see sense and potentially save yourself from long term pain of steroid addiction.

I figured I would reflect on and talk a little about what 2014 had in store for me so that I can look back and see how far I have come.

The start of 2014 was great. I was in a good place, my skin was pretty decent. I was able to wear black clothing, go out with my friends more, work more full time hours and not have to worry about my skin.

This soon changed. The start of the year my other half was in a bad place mentally and we needed to get out of Lincoln and find him a new job where he could relax and feel appreciated for all his efforts. I was also yearning for change as Lincoln had become a bit stale and I felt ready to move on and go forward with life. He found a fantastic job in Leeds, and off we moved at the end of April. However even though I did not feel at all stressed as I was excited for the change, my body had other ideas and off again started the pain and misery of my second full body flare. I was gutted. I wanted good change, to finally get on with my life.

I believe it has to do with the change of environment but there is little you can do until your body naturally adjusts. So pain was endured and I had to begrudgingly take time off work. After a trip to the doctors where I was given an antibiotic that I had used numerous times in the past I woke up the next day having had an allergic reaction. I was shipped to hospital only to be told it was 'just my eczema' giving me grief. Even though it was obviously an allergic reaction given my face and eyes had completely swelled up, just as it does when I am faced with allergens. Funnily the swelling went away after I had ceased the usage.

I was then sent to the dermatologist to continue with treatment that I had received at Lincoln hospital which turned out to be a nightmare having to start from scratch as they didn't seem to be able to locate any of my previous notes. There was a big family wedding coming up in August and I needed something to control my skin, so after a lot of arguing that I wasn't going to use steroidal treatment we agreed to put me back on Ciclosporin even though I was apprehensive because it had failed to work the last time and I ended up with MRSA in 2013.

The Ciclosporin worked its magic, but only for a short period. By the end of October my skin gradually became worse and worse and I dealt with more and more infections. I'm still in this place now where I don't know when my next infection is going to occur but I feel it could just be around the corner. I have a follow up appointment next week with the dermatologist which I am not looking forward to but I will see if it is possible to carry out blood work for deficiencies.

There has been one excellent thing though. I actually went home to my family for Christmas this year and it was great. My brother also has a cat and I didn't appear to react for the entire duration of the day. I did however start to get sneezy at my mum's house but all in all I was ecstatic that I could stand to be there at all.

I really hope this is the year things start to look up for me. I would ideally like to be doing a different job that doesn't involve me dealing with members of the public on a daily basis, as this is contributing to my endless infections, despite my precautions to use hand sanitisers and the like. I feel an office based job would be better suited for my recovery and much less stressful overall. Yet without the relevant experience and my awful absence record I'm still going to be stuck for a long while yet. Ho hum. My absence will only get better if I have a better suited job so it is a bit of a vicious circle right now. I feel stuck in a rut and want to broaden my skill set and be able to lead the happy life I had intended.

I hope everyone else is well and I endeavour to update more frequently again.