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?
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.
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.
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?
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?
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.
Have you tried apple cider vinegar or Epsom salt?
Nope, never wanted to – although I have heard absolutely wonderful things about both.
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
This is great! Thank you! My daughter doesn't really experience "breaks" either! - @allergymadre
ReplyDeleteThank you Em! I hope your daughter improves very soon. Love your food pics on Instagram :D Hugs <3 xxx
DeleteHi Cara, My name is Josh Saunders, I write for the national newspapers and women’s lifestyle magazines for Caters News Agency. I’m looking to raise awareness of Topical Steroid Withdrawal and came across you video, I wanted to see if I could give you a call to explain more? We would be able to get you a paid deal with a magazine as well as letting you check you’re happy with any article before it’s sent off to the national newspapers. Could you get in touch so we can talk more? Thanks for being brave enough to raise awareness through your video online, it’s a really important issue that more families need to know about before embarking on a course of steroids. Thank you for reading this, I hope to hear from you via joshuasaunders@catersnews.com , Josh
ReplyDeleteHello I would like to ask you just about diet - did you eat diary, gluten, potatoes, meat etc? is there chance to just write example of your meal during day? just for me. Thank you much.
ReplyDeleteHello Cara, I am 13 month tsw and used steroids less than a year on face during pregnancy rash on face. I don't use any products on face only clean it with water did you use a cleanser during tsw for face? and if yes what kind? did you remove the dead skin from face and how?
ReplyDeleteCongratulations on reaching 13 months!! An amazing achievement :) I never used a cleanser - like you, I just washed my face with warm water once a day, which I have continued to do. I also just left the dead skin alone where possible and didn't remove it.
DeleteHugs
Cara xxxx
Hi Cara,
DeleteI am 13 months tsw and I only applied on the face and that's the only area affected. My worry is that my cheeks are still red and flaky so I worry that could infection be the cause of the redness only on cheeks the rest of skin is back to normal color. I have been Dr. Rappaport online patient for 6 months and he says no infection. How long did it take for the redness on your face to heal? and what did you do or applied? I only use water to cleanse and nothing else. Did you ever worry or get infections? Where you under doctors treatment?
thank you so much I feel so stressed out and depressed . And the online consultations with Dr. Rappaport are very expensive in the six months it's been $1,400 and if I want to send him pics and questions I have to pay $625. more
Thank you for the question, hopefully I'll answer everything you have asked me. I only saw a doctor at the beginning of my withdrawal who would check my blood pressure and stuff like that but he had never seen anyone going through TSW before so couldn't really offer any medical support. I didn't bother going after a while and more relied on the fact that I knew I would get better eventually and it would just take time. There were days when I was seriously ill and my mum wanted to take me to hospital but I said no because I didn't want them to force me back on steroids. There were definitely periods where I was concerned about various symptoms but because I saw others online that had what I had, I never worried too much and just accepted it was all just part of TSW. I mean, if Dr Rapaport says you don't have an infection, it's likely you don't - he's had 30+ years of experience treating this condition and sometimes a lot of symptoms like the weeping skin and oedema etc can look like infection when it's not. You could always go to a regular doctor to see what they say about it to put your mind at rest. My advice to you would be to not overthink things. If you worry about every single change in your skin, of which there are many, you would go mad - I definitely would have. Stay vigilant like you are with infections but just try not to worry. The redness on my face calmed down over time until it was gone and for well over a year I haven't really had any problems!
DeleteApart from all that, congratulations on 13 months - that is an amazing achievement and wishing you the best of luck with the rest of your withdrawal.
Hugs
Cara xxxx
hi cara, i see the rashes comes and goes, what treatment do you do when the rashes comes?
ReplyDeleteHi Steven, I don't do anything - I just let them come and wait for them to go. I believe putting anything on them only irritates and prolongs them.
DeleteHugs xxxx