TSW. Trichotillomania. Books. Life.

Some (more) FAQs



As more and more people find out about TSW and the more my Instagram, blog and YouTube grows, the more questions I get asked. I have already written a frequently asked questions blog post (here) but there are other questions I have been asked about recently that are too important not to cover as well. I hope you find it informative but of course if you have any questions I haven't covered in this or my other post, do not hesitate to contact me.

How long did you use topical steroids for?
I used topical steroids cumulatively for WELL over ten years. This is only a rough estimate, and I am sure it is much longer than that, but it’s the only figure I can be totally sure of. I used a course of oral steroids in my teens then mostly milder steroid creams like Eumovate and hydrocortisone twice a day throughout most of my ‘addiction’. I also used Betnovate and other stronger steroid creams but that was in the earlier stages of my dependency.

How long did it take for you to 'heal'?
I don't think I can ever bring myself to use the word ‘heal’ but I will say that my skin suddenly changed for the better after twenty-six/twenty-seven months of withdrawal and since then, I’ve only experienced mild rashes and two isolated flares on my hands which lasted a matter of days and not months like during withdrawal. 

Were you able to work while going through TSW?
No, not at all. I tried working for the first three weeks of withdrawal but after that, it was actually my mum who stopped me from going and said she would support me. I was pretty much housebound for over two years.

Why do you think you got better when you did?
As time goes on, the more I think that you get better when you're meant to and my withdrawal had simply run its course. I have said many times that I think a healthy diet is important BUT I believe you get better regardless. I also think that things like steroid usage, age, climate etc. play a part … but could someone just research this already and give us some peace of mind.

Do you think there is a link between periods and flaring?
Honestly for me, there hasn’t appeared to be any link. One day I might start to see a pattern forming, but the rashes I get tend to be sporadic.

Did you experience oozing?
Oh my goodness yes. I oozed from my face, neck, chest, arms, back, left ankle and hands. Luckily, it only lasted on the whole for the first three months with more isolated oozing on my hands and left ankle later on. It's a draining part of the process (quite literally) and when it stopped, the relief was immense.

Did you suffer with insomnia?
I didn't sleep much for the first year of withdrawal and during the first six months especially, I barely got more than two hours in one go. This is extremely tough to deal with as you spend your days exhausted and desperate to sleep but can't when you have the chance to. 

Did you suffer with anxiety while going through TSW?
Absolutely.

Do you suffer from asthma?
No.

Have you ever taken oral steroids?
Yes. I took one course of what I believe was Prednisone in my teens and part of me thinks that was when I developed TSA.

Did you sweat excessively through withdrawal?
I certainly did – more like I was a human waterfall. It was in the second year of withdrawal when the sweating started and out of all the symptoms, this was something I found extremely hard to deal with. Without moving much at all, there were times where I would be covered in sweat. I would wake up drenched in it, and if I got excited in any way – even just talking to a friend on the phone – I would sweat profusely. A lot of people say it's a sign that the body is healing and now, looking back, I would tend to agree. My sweating is completely back to normal now and has been since I recovered over two years ago. 

Now that you are better do you still get itchy?
Not really. On the very rare occasions that I ever do get itchy, it’s just a mild irritation that I can ignore and definitely not that bone-deep itch you experience while going through withdrawal – more like a feather gently tickling my skin. 

What do you eat?
I eat a balanced diet which includes gluten and dairy, amongst other things, and regularly indulge. I have what I want but choose to eat well most of the time.


So that is all for now but like I said above, if you have any other questions I haven't covered, do let me know!

And another thing that you might need reminding of today: you WILL get better!

Hugs
Cara xxx

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.

***

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

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