TSW Cara

Friday, 30 October 2015

My Topical Steroid Withdrawal update – Month 29

If you have come to this post via my month 29 update video (here), as promised, below are some photos taken from Tuesday 6th to Monday 26th October 2015. As I said in my video, I had to film and post this a week early as I am taking part in NaNoWriMo - to find out more about what that is, watch my video linked above or visit nanowrimo.org.

I also forgot to also mention in my video that every Tuesday over on my Instagram account (here), I post #TransformationTuesday photos of my skin, before and after style, and it's really quite shocking to see how my skin has changed throughout my withdrawal. I also post food pictures (standard) and a lot of random nature shots (I'm truly quite obsessed).

Sending you all BIG hugs *braces self for winter and writing until my hands drop off*

Cara xxx

From mum's perspective: My daughter's eczema history and my views on Topical Steroids

Here is one final post from my mum's perspective. It is all about my eczema history and her view of topical steroids which might help parents with young children who have eczema especially. I found it hard to read as it brought up certain unpleasant memories. I really hope that one day the treatment of eczema is changed because it is simply not working and only causing other problems like TSA.

Big hugs
Cara xxx

In my mum's words:

I think Cara’s eczema started when she was just over 6 months old. I remember she had a small patch of dry skin on her wrist and I mentioned it at the baby clinic. I was told that it looked like eczema and that I should take her to the doctor. I did and hydrocortisone was prescribed for her. I read the label and was reluctant to use it, but I did, and more patches came up all over her body. That was the start of years of doctor and hospital appointments and countless prescriptions for various strengths of topical steroids in cream and ointment form with some containing antibiotic and antifungal agents. I also had a cupboard full of emollients and products to use in the bath.

At the time, I was told eczema was incurable, so joined the National Eczema Society. I bought the NES Christmas cards every year and sold stickers in Brent Cross with my mum helping to raise money for research, hoping that a cure would be found because seeing my daughter so uncomfortable was heart-breaking. After her bath, I would use the prescribed creams and emollients and her skin would come up red and angry. I did what I was supposed to be doing, but it didn’t seem right to me. I was told that she mustn’t scratch because she could be open to infection and that it thins the skin, so bought cotton all-in-one pyjamas with covered hands and feet that I found out about from the National Eczema Society. They were very expensive – I think about £25 each. She only wore them for a very short time because it was like seeing the person you love itchy in a straightjacket – torture.

I applied topical steroids only when absolutely necessary and very sparingly and Cara’s skin was not too bad during the latter part of her time at primary school. She was very happy and loved school.

When Cara started secondary school, her skin became really bad again. She was extremely unhappy at school and started to have regular appointments with a dermatologist at the hospital. I would go with her before school and I have to say that it was a very unpleasant experience. The doctors we saw would get very irritated that her skin wasn’t improving and said that we were not using the prescribed creams correctly. One doctor was so bad I told him that Cara was being bullied at school and didn’t need to be bullied by him too. He apologised and said that because she was so stressed it was probably making her skin worse. There was a ray of sunshine at the hospital in the form of a nurse who had eczema. She gave Cara some good tips and really understood what it was like to live with a skin condition.

Cara’s skin became so bad in her mid-teens that she was prescribed oral steroids. I think it was a three-month course and she had to carry a card with her for a year after saying that she had taken them. I really didn’t want her to take them and felt that she was pushed into it to some degree. Cara also took a lot of antibiotics during her teens because her skin became infected regularly.

Looking back, I think I know what may have caused a reaction in Cara’s skin at 6 months old, but of course I can’t be certain. I breastfed Cara for 14 months in total but started to give her cow’s milk at 6 months and I think her skin was reacting to that. With hindsight, and everything I know now, I would have stopped giving her cow’s milk and left the small patch of ‘eczema’ alone.

My thoughts on topical steroid withdrawal:
It should never get to the point where TSW is required. I think topical steroids are over-prescribed and you can also buy them over the counter. It says on the leaflet to only use them for a short time and under the close supervision of a doctor. If statistics are anything to go by, how can that ever be monitored? People have to study/work/look after children etc. and are caught in a cycle of using topical steroids in order to function while building up another skin condition along with other problems that will come to a head sooner or later. I don’t know what the answer is, and have no medical training whatsoever, but feel that when skin becomes inflamed, it is an indication that something isn’t working properly on the inside.

Some FAQs

Since highlighting my Topical Steroid Withdrawal story on YouTube and Facebook etc. I've had a lot of questions about certain aspects of my experience. There were some questions that kept cropping up so I thought it might be a good idea if I list them below and hopefully help some of you out there.

Do you think you can withdraw from Topical Steroids slowly to ease symptoms of withdrawal?
Honestly, no. I think you just have to do it cold turkey. I think it differs depending on what steroids you used though and might not be safe to do so (e.g. oral steroids) so do a lot of research before embarking on this and please seek medical advice. www.ITSAN.org is the mothership for all things topical steroid withdrawal so I would definitely recommend visiting the site before you do anything else. I should also mention that over the years I tried weaning myself down to the lowest amount of steroid cream possible, but it was only when I stopped using them completely that my ‘eczema’ would come back severely

Did you find when you got better, it was sudden or gradual?

For me, it was the case of one day looking at my skin and realising I was better. Really. It's been well over two years since that happened and I still don’t think it has actually sunk in.

Did you have 'breaks' throughout your withdrawal?
In a word, no. I had slightly calmer phases followed by bad flares but no breaks where I could actually live my life. It was pretty debilitating for me throughout the entire two years of withdrawal.

Have you ever used Protopic? If so, what are your views on it?

I have used Protopic in the past and my views are, to be blunt, extremely negative. I was initially given Protopic as a teenager and experienced severe burning in water and even though I stayed well out of the sun, I developed a lot of very worrying freckles whilst using it to the point where I had to go to the hospital and get photos taken. Avoid.

What did you use to combat the elephant skin?
The best remedy for elephant skin is time. It goes, just trust the process.

Did you experience hair loss through Topical Steroid Withdrawal?
Unfortunately, yes. I lost a lot of hair especially around my hairline and eyebrows, but it all grew back.

Did you experience oedema through Topical Steroid Withdrawal?
Yes, very badly in my arms to begin with, along with my face, neck and back. It slowly went down during the first six to twelve months of withdrawal.

Did you use any drugs to ease symptoms?

Bar the odd antihistamine, I used absolutely no drugs to alleviate symptoms, my thoughts being that I was withdrawing from one drug and didn't want to replace it with something else – I almost wanted to flush out my entire system. I also found that antihistamines weren’t worth it so in the end, I didn’t even bother taking them. I know there are others who take various drugs to ease symptoms during withdrawal, which I totally understand, but not having anything felt right for me at the time and through this process you’ve got to do what’s best for YOU.

Have you tried apple cider vinegar or Epsom salt?

Nope, never wanted to – although I have heard absolutely wonderful things about both.

How did you tackle the loss of movement and flaking while doing Moisturiser Withdrawal (MW)?
I think because I did moisturiser withdrawal so slowly, I was somewhat able to control the flaking and movement. I did have a hard time especially through the colder months though where my skin was extremely dry and cracked so I decided when it got really bad to use moisturiser again but that didn't work out very well.

What skincare/make-up do you use?
My beauty routine is very simple now and a full blog post covering every beauty product I use can be found here.

Did you take any supplements?
No.

What do you have to say to anyone who is struggling and thinking of using topical steroids again?
When I say that topical steroid withdrawal was one of the best things I have ever done, I mean it wholeheartedly. Before withdrawal, all my life in one way or another I had to think about my skin. I was told countless times that eczema was ‘incurable’ and that the only treatments available to me were topical steroids or immunosuppressants. On Thursday 6th June 2013, when I found out about TSW, it felt like a weight had been lifted off my shoulders. The answer made total sense to me and even though it took a long time to get to the stage I am now, it was never really an option to use topical steroids again as they offered no real solution to the actual problem.

To anyone suffering at the moment, ask yourself if topical steroids are the answer. If you broke down and used them again, think about what would happen in the future. Where do you go when the strongest ones stop working? This process is immensely tough but SO worth it. Try to stay realistic about how long the process will take and NEVER say by X date I will be ‘healed’ – just take every day as it comes and always remember that you WILL get better in the end.

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I really hope these questions helped some of you reading this but of course leave a comment or email me *tswcara (at) hotmail (dot) com* if I haven't answered your question above.

As always, sending you all big hugs.
Cara xxx