6 weeks closer to healing……..

Well TSW is a rollercoaster… face got better and literally a day or two later and it was back to crap. Hair still coming out, feet still awful, red sleeves red again, lymph nodes still eggs. Rashes on whole body only tip of nose is normal skin. Yoda eyelids back again. Oozy areas between fingers, inner thighs, back of knees.

My eyelid twin, May the 4th be with you

My eyelid twin, May the 4th be with you

Crazy itching on jaw line and neck and cheeks. Interesting that it totally fits with where the lymph nodes are on head and neck as the awful itchy bits. It feels like something crawling under the skin or that you are being stabbed with pins until you cannot keep your hands off it. (A bit like that scene in the mummy film with the scarab running around under the guys skin, yep my face feels like that, and some people say don’t scratch, ha)  Even just rubbing it causes it to ooze then form lovely scabby crusts. It did at one point look like I’d been in a fight and dragged across some gravel. Face must be the worst place to have tsw as you cannot hide it, I really hope it is the first place to clear. I hardly sleep when cheeks are oozing/itching as I normally sleep on my side which results in my face sticking to the pillow and setting of the ooze again.

I found a nice smooth bit of skin on my bum. One bit. That is all I get. Sigh. Why can’t that smooth bit be on my sodding face?! I considered wearing ass –less chaps just to show it off (kidding)

If everyone had bums for faces at least my smooth bit of skin would be on show

If everyone had bums for faces at least my smooth bit of skin would be on show

Nipples are crusting and one looks like it might drop off. Really thought this was due to not wearing a bra, like joggers nipple, then I remembered my lifestyle is mostly sedentary now, and I do not jog. It is also a TSW thing, I can say for sure I never put the evil cream on my nips!

Still sticking with moisturiser withdrawal on body, jojoba on my face. Been working on having the healthiest diet I can to try and support my body as best I can. Eating lots of fruit (as one massive fruit salad daily) veggies, nuts and seeds. I take turmeric each day and aloe vera. I take a hair and nail supplement and evening primrose oil.6 weeks arm

I shed about a cup of skin a day, although one night the ‘big shed’ happened. My whole body literally looked like a dehydrated cracked desert then so much skin was coming off I felt furry. Absolutely horrendous and amazing at the same time. Hoped I would get a little break after this… but no luck, cycle of red, itching, oozing just started again.

the bed 'sand' I wake up to every day, Apologies to anyone eating parmesan cheese while reading this

what I wake up to every day

yoda eyelids and very crusty face

yoda eyelids and very crusty face

I have been on methotrexate for 6 weeks now so I can try and reduce my symptoms to get back to work, dosage was increased to 20 mg this week. I haven’t seen much difference yet so hoping it may kick in soon. Unfortunately after taking Wednesday’s dosage I did not feel good. Went grey and pale (not itchy and red for once ) but then pretty much fainted, ears were ringing too, laid out on floor for a while, speaking to my mum helped as I was freaking out a bit. Came round but then threw up. I rang the hospital and they said to just take next dose next week. So rubbish that I have to resort to taking these horrible medications due to a side effect from a stupid cream.

I always wondered whether the drug companies knew about TSA, well this week I found out that they definitely do. A friend told me she used to work for one of the companies. Staff are trained and provided with personal protective equipment to wear when ‘handling’ topical steroid creams to avoid ‘steroid addiction and subsequent withdrawal’ So why then are doctors not told this by the drug companies? Why are patients not told how dangerous these creams really are? Why are caregivers/parents not given protective gloves to protect themselves too?

Because…. ADDICTION PAYS

They get round this by instructions on the insert that say ‘do not use for more than 2 weeks…. Unless prescribed by a doctor’ But…. The doctors don’t know about the addiction and withdrawal, so creams are prescribed and prescribed in increasing potencies. I do believe doctors care about their patients and would be horrified to think that topical steroids can ruin people’s lives. Unfortunately until TSA is in the NICE guidelines and doctors are trained how to recognise and help people go through this horrible process it will happen again and again. It is totally avoidable.

Every week I realise that sooo many people I know use these creams. If you do, and have for a while and think you have TSA, I am sorry. This is hell. I would not wish it on anyone. Actually, no, I would wish it on the top dogs in the steroid drug companies, they could at least itch and ooze on their bed on money.

If you use ts but do not have ‘addiction’ please be careful, not enough is known as to why some people get this and others don’t. It is probably cumulative, you don’t know which application will tip the balance into addiction, and it may be genetic as to who is more at risk, again how do you know for sure? I think in society we are too quick to treat a tiny rash which would probably go on its own, too ‘keen to put something on it,’ To those lucky enough to have never needed to use topical steroids, would you want to now knowing this?

One thing I know for sure I will never ever let this crap touch my skin again. Rant over.

Positives this week….. er… one smooth bit of skin on my arse… that’s seriously about it… and on the bright side it could be a lot worse.

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1 month closer to healing……

Yey I have finished my first month!! I don’t think I have gone this long without topical steroids in my life.

So this week I have only had a tiny bit of ooze on jaw line.face month 1 Neck is a little rashy but manageable. Feet still scabby and sheddy. Lymph nodes still huge. Itch comes in intense waves, crazy itchy all over then ok for an hour or two. Temperature control still off but weird chill sweats have reduced. Red sleeves are more of a ‘pink’ this week which is good. I have been told face looks better, it is certainly itchier and very sheddy but more pink than red.Eye lids do still swell up on a night time and I feel like yoda when I wake up in the morning as they are more like tri-lids than eyelids.

hair monster

hair monster

1 month knee

elephant knees.

.

Hair loss has increased again I hate washing it as I feel a bit down when I realise how much has come out. Skin is crazy thick I can scratch and scratch my body and I’m not full of holes. There is elephant skin on my elbows, knees, ankles and hands. Ian thinks skin looks a bit better but ‘it just needs to realise you aren’t as big as it thinks you are as you don’t need so much.’ Good way of looking at elephant skin. Skin is shedding massively I have to vacuum my bed and bedroom every day. My skin on my legs and feet still has that weird purple- grey colour I really hope one day that will go away too.

crazy thick skin

crazy thick skin

arm 1 month

arm less red!

Interestingly I have had asthma all my life. I have used salbutamol and becotide since childhood but eczema and topical steroids came first. I needed inhalers for exercise or if my asthma was triggered by dust, damp or illness. I often used my salbutamol daily. I started using my steroid inhaler less and less 10 months ago and then stopped it completely, my asthma symptoms seemed to be the best they had ever been once I stopped elocon cream. I cannot remember the last time I used by salbutamol inhaler it must be at least months, the longest I have ever gone without it. I wonder if I will even have asthma by the time I am through withdrawal and maybe it was all steroid addiction for me, after all there is a saying ‘the lungs are the skin inside out’.

For comfort I am still using Epsom salt baths or oat baths. I tried apple cider vinegar on the face when it was particularly red but it is hard to dab something on when you know it is going to sting. I found it easier to do in the bath next to the open window to get a breeze on my face to take away the sting, it seemed to hurt less the more swear words that came out of my mouth, let’s hope the neighbours weren’t in their garden. On the face I have started using Egyptian magic cream, and jojoba oil on

hands for mobility. On the rest of my body I am trying moisturiser Withdrawal. My body seems to be more comfortable without moisturiser at the moment, less itching and burning, also on the upside there is less clumps of greasy skin under my nails.

Normal healthy skin produces its own oils naturally. Topical steroids ruin the barrier function of skin so this ability seems to be lost. Moisturisers artificially create the feeling of moisturised skin, but in doing so the skin is less inclined to try and produce its own oils. Moisturiser withdrawal is to help the skin recover its ability work as normal skin. A better explanation is on this link http://mototsugufukaya.blogspot.jp/2013/06/is-moisturizing-really-help-to-cure.html

Dr Fukaya also has a book which gives lots of information on TSA and theories into why this happens. The link is here and definitely worth a read (especially for any of my friends in medicine who may see patients on ts)

http://topicalsteroidaddiction.weebly.com/contents.html

Dr Fukaya also recommends getting your eyes checked, I went for my eye test this week. The optician was lovely and very thorough. I am lucky I do not have any of the complications as below:

http://mototsugufukaya.blogspot.jp/search/label/ophthalmological%20complications

However I was experiencing a bit of foggy vision, this turned out to be due to a reduced tear film, normal is about 12 seconds before it breaks up, mine was 2 seconds, there was some damage to my cornea epithelium in my right eye for this reason. As recommended I am using gel eye drops for bed, today my eyes feel a bit better. I think this fits with the whole dry skin, dry hair thing too, which I’m hoping resolves with TSA

It was ground hog day back at the derm who still thinks I have ‘eczema’ this week. Every week without fail I get asked about moisturisers, every week I say’ no, as they make me more uncomfortable’. Then the conversation came back round to do I want to come to hospital, and again I say ‘no’. Then,’ do you want some protopic for the face’, I said ‘no’ and then, ‘do you want some topical steroids???!!!??’ wtf ?? After having been at least 10 times and I have said NO every time? Still trying to give out the skin heroin eh !!? Still flogging that dead horse, eh ??!! I said’ No’, again, ‘that ship has sailed’ Jees, surely insanity is trying the same thing again and again and expecting a different result. I really hope one day TSA is recognised, and that it is looked back on in history and compared to the days when they used to prescribe smoking cigarettes for everything.

Positives this week…. Still no asthma (yey), less ooze, some better days this week, I was reassured I don’t have any hideous eye problems so when I go back to work I’ll still be able to see which tooth I’m meant to be drilling which is always a good thing!