Sunday, 22 May 2016

3yrs Topical Steroid Withdrawal

Hey everyone!

Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.

My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.

I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.

I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.

I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.

At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.

Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.

This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!  

I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.

I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.

Some photographs from my skin hell journey over these past years:

 PRE-TSW

Weird triangle-nose face rash


Weird rash on thigh


Bruising on thigh from over-scratching


Same as 1st image but a different day


DURING TSW

Allergic reaction to staying round mum's with the cats


All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs

A mixture of TSW/ MRSA/ Elephant skin

Swollen eye

During MRSA/ TSW period


The result of bad skin and skin picking compulsion (dermatillomania)

Rash


Eczema herpeticum and Cellulitis of the eye


Red sleeve 


MRSA/ TSW


Ooze


Leg sleeve


Development of Pompholyx

Tummy rash


Skin flakes

More flakes



Tight, hardened ooze and raw open wounds


Thigh rash


The tissue nightmare of constant ooze

Elephant skin

2014 - Thin hair

I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.

Hope everyone else isn't suffering too much. Happy healing!

18 comments :

  1. Jenny, you are very brave women. I am so proud of you. Now you look amazing :) Tell me, how to deal with it? I have read a lot of articles, about eczema symptoms and etc. (for example http://www.online-dermatologist.com/eczema-in-children), but there is not any tips to psychological treatment. Please, tell me, Jenny.

    ReplyDelete
  2. Oh Jenny my heart breaks for you, but good god girl, you're amazing.
    I can totally relate to weird triangle nose and scratch bruising! My condition is mild in comparison but with many parallels so have been following you a while. You've helped my outlook and inspired me so thank you. Thank you. Thank you.

    ReplyDelete
  3. Hi Jenny! It is amazing how similar your condition is to mine, I really would like to come in contact with you!
    I have never met or seen anyone who have the exact same health issues, please, please write to me, pia.anderzon(a)gmail.com

    ReplyDelete
  4. Hi Jenny, all the power and strength to you! Stick to a vegan diet and see if you can also cut out the gluten. Maybe adding a gluten-free diet will help too. Have you heard of amaranth oil? It's worth doing some research on it. Also, this cream containing amaranth oil may help :) http://www.5-am.co/skin-repair-cream/

    ReplyDelete
  5. Try olive oil!!!!! My daughter has eczema and I get it as well. Not as bad as yours but we have tried every steroid and eczema cream and lotions and nothing really makes it go away. I recently read about olive oil and thought to give it s try. Miraculously it worked. It's GONE. With using it twice a day with her current prescription ointment. I would try it. You probably have it in your kitchen. Read up on it.

    ReplyDelete
  6. Congratulations on 3 yrs steroid free. You are really brave posting your pictures and I am sure you are helping so many people. I have severe atopic eczema and have been steroid free for nearly a year. My eczema behaves in a very similar way to yours, coming off steroid cream is the best thing I have done. I am starting to experiment with my diet and I am trying to eat only natural, raw foods - this seems to be helping. I am also blogging my eczema journey, I look forward to following yours from now on! Thought I'd let you know that I feel your pain. Thanks for sharing, Frankie x

    ReplyDelete
  7. When I read this story I realized just how similar it was to my eczema.
    I was so desperate that I tried every thick, smelly cream and goopy ointment I could get my hands on. Nothing really worked permanently and the eczema always came back.
    I knew that there had to be another way. I searched long and hard and finally came across some simple natural remedies that finally made my embarrassing eczema disappear for good...to the amazement of my doctor.
    In fact, you might want to check out this article, it really helped me a lot:
    http://www.journalofnaturalhealth.com/eczemaremedy

    Hope it helps anyone reading this!


    Laura Davis
    lauradavis3@gmx.com
    http://www.journalofnaturalhealth.com/eczemaremedy

    ReplyDelete
  8. Try Hemp oil. You can buy it in health food stores. Get organic natural oil take a few drop a day. Also you can buy Hemp oil cream to apply to the skin. The body shop is one place to get it. I am not connected with any hemp oil business, I have just seen a great improvementt since the use of it.

    http://oilhealthbenefits.com/hemp-oil/

    ReplyDelete
  9. Truly an informative post! The causes of Urtikaria or hives are foods, medicine reactions and infections. Its treatment is very important and I personally think that consulting a professional would be a best way rather than treating it at home. Isn’t it true?

    ReplyDelete
  10. Good Information ..
    Thank you for sharing :)

    ReplyDelete
  11. First of all I want to say that you are inspirational to share your story the way you have.

    As a sufferer all my life, let me tell you the absolute BEST thing to help. And I'm talking a near enough cure (I'm aware there is no cure)

    This will be very annoying and typical to what everyone says but here goes...

    You need to quit scratching.

    And please don't take this in a way where a co worker or someone you know sees that you are scratching and they say "you do know that you will make it worse if you scratch right?"... I'm aware of how annoying and upsetting it is to hear it all the time.

    The hard part is how to quit scratching. Well for me, i had to get my skin in to an "ok state"...ish. Just enough where i could start to train myself not to scratch. Eventually to NEVER scratch. Not even a single swipe with my nails.

    To get myself into a bearable state to accomplish this, i did use a topical steroid unfortunately. However i didn't misuse it.

    Steroid cream does have severe consequences but using it properly makes it nothing less than a miracle for some people.

    That being said, i repeat, the true treatment is to completely eliminate scratching 100%

    Kindest regards

    Hezekiah

    ReplyDelete
  12. Dermalmd Serum best ever...I've had eczema all my life and have been looking for something without steroids to help clear up my skin. I've been getting closer with other natural remedies but this serum is THE winner! Stops itching and not only moisturizea but heals my skin. AND it's organic...full of "good for you" ingredients. If you have eczema or just dry/itchy skin, this is a "must try"!

    ReplyDelete
  13. I had rashes through my childhood, turned out later I was allergic to milk but what helped me cure my excema was pure rubbing alcohol. My dad applied it directly on my rash and within a week it started to disappear. He would apply then blow on it. It cured every type of rash I had even the scaly kind. I'm now 44 and it has never come back.

    ReplyDelete
  14. I had a large, thick patch of eczema on my shin that nothing was helping. What the doctor prescribed, the eczema laughed at, and it just continued to grow larger, thicken and itch! After reading the reviews about foderma serum on google, I figured, why not, give it a shot and ordered it. It arrived fab 1st. I was skeptical, but applied it to the horrid patch every morning and every evening. It is now march 2nd. The patch is gone! Completely healed!! This stuff is AMAZING!!! I just ordered it for my Daughter in law for her eczema! Highly recommend!

    ReplyDelete
  15. Girl, I know exactly how you feel, I (and also my sister) have eczema for whole my life and as I needed to have applied corticosteroids in by the IV and then went on cyclosporin around two years ago also the herpes virus hit me. The issue is unless we get the virus out of our system, which is at current development impossible, you can only treat the symptoms. Basically you suppress the immune system with cortisol and kind of let the virus spread a little bit more for the price of calm period. So far the solution lies in the CRISPr, or similar technology, but for that we need more brains in the biotech-programming industry, how far that is I can not tell you. So not just for the kind of bad news, what helps me is sea vacation but at least 3 weeks, of course careful with the sun, I would recommend to go bathing and sunning before 10 am and after 16-17 pm. Anyways I just hit your blog and love your courage and sharing, thank you for that. Even though I can not help you physically, I think I can encourage you mentally a bit, as I have it on face and torso at as bad condition as you do. I go to work normally everyday and I just managed to not give a fuck, maybe I have it easier as I am a guy, but if it wouldn't feel shitty itchy burny I couldn't be caring less about it. For the last it is like with anything in life, just never give up.

    ReplyDelete
  16. This is how I cured my eczema. got off the steroids, quit taking showers & baths & only washed with water under my arms & private parts. It would seem like the water dried my skin more & made it bumpy & itchy even though I would put a moisturizer on when it still was wet it still caused me problems so I quit taking them. Also I would ONLY put a moisturizer on where the part on my skin itched. Slathering your whole skin up at once several times a day is not letting your skin breathe & only making it worse, if you over do it it will never heal, so just put the moisturizer on the parts where it itches & that's it. My favorite ones are Aveeno Naturals & Vaniply. I'm allergic to parrafins, beeswax & even Vaseline, they make my skin itch like crazy. At night I take 2 Xanax to help me relax & so I don't get agitated & start to itch & I'll combine that with 2 Benadryl & off to sleep with no itching. If I do have an itch I always keep my Aveeno on my night stand & put that on & I'm back to sleep. I also can't use any fragrance oils with alcohol or any scent to them but Jojoba oil seems to be okay. Sometimes all natural oils are not always good instead of making your skin soft they can always irritated it as well. Another culprit is sugar, if I eat too much of it my skin will flare up & I'm also allergic to soy. Eating whole foods are about the only thing that works for me & putting on my lotion on only the part of my skin that itches & that's it & that's what worked for me!!!!

    ReplyDelete
  17. Hi Dear,

    i Like Your Blog Very Much..I see Daily Your Blog ,is A Very Useful For me.

    Buy steroids UK You can buy quality steroids online from wide range of steroid stock and exceptional delivery service in UK & Europe @ sunsetisland-steroids.com


    Visit site :- https://www.sunsetisland-steroids.com/home

    ReplyDelete