This post is coming almost 10 days late. I wish it was because I was partying so hard that I just didn’t have time to sit down and write about my 11th month of this condition, but unfortunately that’s not the case.
December 14th, I left for Toronto to see my husband and to spend Christmas with him. I was ecstatic to see him. My skin was looking way better than it had when he left 3 months ago for his work tour (Disney On Ice), and I hoped it would stay that way.
Not the case.
After the first week there, my skin really headed south. I went back to the good old days (Month 1 + 2). I started to swell immensely, burn with a vengeance, oozing, horrific sleep, loss of temperature regulation, and overall turned into a tomato.
Two days before I had to leave, I broke down at 7am, woke my husband up, and told him I would not be able to fly back home alone. He could tell the same. He and my mother looked around for flights for us both to take home, as well as flights to get him immediately back to his tour. My poor husband was on double duty, working and taking care of me.
Luckily, my mother found us flights.
The airport was the most horrific experience. I needed a wheelchair. American Airlines would not give me one until my husband checked us in. Since their self-check in machines weren’t working, he had to stand in a long line to get checked in. Did they care I was in pain? No.
Thankfully, when I did get a wheelchair, we could get through security and customs quicker than most people. I was in such rough shape and all I wanted to do was get home and go to an ER.
Saying goodbye to Jack in such a state broke my heart. All I wanted was a perfect two weeks with him, meeting his new friends, hanging out and laughing, yet I got only a few days of it. The rest were spent in bed, bath, and praying the pain would all end.
However, I would do it all over if it meant I got to see my husband again. The first two days we got to see so many sights (his two days off). We even treated ourselves to a 3 course dinner at the CN Tower. Being able to hug him and kiss him was the best feeling. I miss him so much and am so happy I got to spend Christmas with him.
When my mother picked me up from the airport, we drove back to our local ER (took about 45 mins to get there) and we had to wait a bit to be admitted. OMG… I wanted to scream, and kick, and cry, and just tear myself to bits (which I ended up doing to my neck, arms, and legs). I had to keep asking for ice packs because I felt like my upper chest and neck were boiling, yet my body was shaking profusely from how cold the ER was. Nightmare. *side note, my resting heart rate was 97 and my blood pressure was 147/58. I was told that’s normal. How on earth is that normal?!*
I was finally admitted and given a bed. They took lots of blood (painfully at one point since my arms were so swollen they couldn’t find a vein) and sent it off to the lab. My CBC and all that came back normal (though I looked anything BUT normal). My lymph nodes were the size of grapes and I was literally exhausting myself from the anxiety and the constant shaking.
All the ER could offer me was an IV to hydrate me and and a bag of benadryl (oh, and steroids…. which I politely refused). I kept asking, more than once, if I could have some pain medication. It took them forever to give me something, and then wouldn’t give me a small prescription to have some at home.
I knocked out (thankfully) for a bit at the ER, then mom took me home. So thankful she was there through all of it, giving me snacks to eat and generally coping with seeing her daughter in such a state.
It’s been a full week since I’ve been in the ER. Swelling has gone down, the burning isn’t as harsh, and I am not in nearly as much pain. On the downside, I have a nasty cold. Adds to the fun! My mother has been my caretaker and I couldn’t be more grateful.
Also, I should add, I had my first public cry in a mall. I was so embarrassed. We were with my husband’s friends, grabbing an Uber, and I was having trouble closing the van door (my fingers were hurting from the constant scratching I do and I couldn’t press the button hard enough to close the door). The driver kept calling me ‘sir’, thinking I was a boy. I finally said “I’m not a sir!” I’ve been called a boy before and brushed it off because I was by myself, but being in that situation with my husband’s friends, it just took over my anxiety. When we reached the mall, my husband knew I was upset about what the driver called me, and he said I was always beautiful to him. So… I broke down crying in his arms. I couldn’t help it. I felt overwhelmed. This condition is not only physically draining, but mentally.
The photos don’t show how red I really am, but they are a close depiction to the fun I’m having. I’m also trying to eat well to help get the healing process moving.
This is me a few days into my Toronto trip.
This is me about 8-9 days in to the trip
This was the flaking that began to occur, once again
And this is a lovely pic of me and the hubby at Christmas
Not a happy camper at the airport…
Lovely picture of what stuck to my gloves from my hands. My whole body was looking like that.
Me all wrapped trying to help with the swelling and ooze
My knees were scary. Like, I had a panic attack and malled them type of scary. All those flakes are from just my knees.
This is what I’ve got documented. Topical Steroid Withdrawal is no picnic! Please, I beg of anyone reading this, DO NOT use topical steroids (or any steroids) for a long period of time (literally, after 2 weeks of use, you can become addicted— meaning your body will become dependent on the drug and will need to withdrawal from it).
I’m hoping this flare will only last a few weeks so I can get back to taking steps forward, not going a mile back.
Love, B. R. Wren
14 thoughts on “11 Months of TSW (Topical Steroid Withdrawal)”
May I ask why you’re so adamant this is steroid addiction? It just looks like skin that needs medical attention. It’s a common condition among many people who have never used steroids and the symptoms are the same. How long is too long for suffering? If you’re still going through this 10 years from now, do you just “stay the course” and believe it was TS that created this condition? Just curious. The individuals in the TSW groups have so much disdain for TS. With that much hatred, it’s easy to be led astray. Good luck to you and may you heal soon.
I am very adamant that I have topical steroid addiction and need to withdraw from the use of topical steroids because i used topical steroids and Protopic on and off for 3.5 years, along with antiobotics and anti fungals. My skin started looking like a TS addicted sufferer (didn’t know it at the time) and doctors would only put me on oral steroids to which I would only flare again once I was off of them. After having a steroid shot, and two steroid oral packs I found pictures of tsw sufferers and i looked exactly like them. I did the research and knew this was it. Many of those people in the TSW groups feel so strongly about steroids because they don’t want this to happen to anyone else. I certainly don’t and definitely tell my friends who have doctors prescribing heavy topical steroids for their two month old baby to try different route before doing so.
Doctors are too quick to doll out TS and frankly it’s disturbing. I have never said TS was bad, but that long term use was bad and this is what it has done to me and countless others. I’m sorry you may feel otherwise, but there is tremendous research out there with facts about TS addiction and I’ve seen many people heal from this without having to go back on the TS or oral steriods. I believe in the process and I hope you never have to go through this if you decide to use steroids for a long period of time. They kill the body from the inside out.
Thank you for the reply, Briana. Just so you’re aware, my motivation here is not Dr. Aron (who I am vaguely familiar with). I just wanted to make sure you were looking after your skin properly and simply point out that believing in a cause so strongly can make it hard to separate the facts from the overload of information available online. I don’t believe your skin condition is a result of steroid addiction and I hope you consider that at some point as I believe it will finally lead you to a path of healing. Wishing you a wonderful 2016!
Briana, you are such a force of nature and so very likeable. I understand why so many people in TSW hold you up as their hero and role model. I appreciate your good humour, strength and resilience.
Do you ever worry what could happen to children and vulnerable people who may not be blessed with such a strong support network as yourself if they chose to follow your path and the paths of other TSW ‘Warriors’?
What about babies? Can their little bodies be expected to go through this? What is the untold, unseen damage? They can’t express themselves as you can, to release some of the torment.
I know you would say that they have to stop use or they will need to go through longer withdrawal at a future date. But – you have a good imagination… Bear with me…
What IF it isn’t necessary?
What IF there is a safe and effective way of using topical steroids?
There are THOUSANDS of eczema sufferers who say there is and they have experience of it.
What IF they are right and withdrawal isn’t necessary?
Don’t children have a right to a childhood free from pain?
Don’t you deserve to enjoy your life with your loving husband and mother?
If you wanted to would you be able to let go of this mission and try something new? If not it is possible TSW is a terrible trap?
I respect you and hope you wake up clear and ready for life tomorrow, or the next day but the evidence would suggest otherwise.
If you already know what I’m going to say then there isn’t much room for response. Everyone has their own opinion about TSW, understandably. Some find it ridiculous, and that’s ok. There are many people who don’t have the stomach or strength for it. If people wish to try other ways, that’s their path and i respect it. I don’t wish to ever use TS again and I feel this is the appropriate way to deal with the over prescription of TS that many doctors are easily doling out.
If there is a safe way to make this go faster, then I would be open for it, but it usually is using steroids again and or other harsh medications that have repercussions of their own.
And, when it comes to babies, I’ve seen mother’s pull through and have their babies be completely healthy again. I don’t even understand why doctors don’t take the time to find out why babies have skin irritations before rubbing TS on them. Makes me sad. Parents have a tough job withdrawing their children and I fully understand if they wish to try other ways, but for me, TSW is the way.
Briana, it is a pity to see you use this opportunity to suggest – once again – that those refusing to do TSW are not strong people. Who should ‘stomach’ their baby endlessly suffering? You didn’t answer several of the questions I posed openly. Would you advise people without a strong support network to embark upon TSW? As suffering is embraced with TSW communities – how can parents know when enough is enough and bring their children to hospital? What about the side effects of letting bodies get into such appalling states?
I don’t think TSW is ridiculous I think it is utterly tragic and unnecessary, my baby had the symptoms described before even starting to use steroids, it is severe infected eczema. Can steroids contribute to the issues, of course, anything and everything can adversely impact on such sensitive skin.
Conventional eczema treatment is totally rubbish, it doesn’t bring a quality of life that can really be embraced, it has side effects that can see, to outweigh the positives. It just doesn’t work.
The Aron Regime though does work and I know you have heard about it. It does work and it sees patients reducing their need for mediation of any kind, including vastly reduced need to TS. Given the enormous success of this regime I strongly believe people should be advised to try it before embarking on TSW. This is particularly true for children in their precious early, years of life.
Do you not think it might be worth your consideration given you are in a position of influence? Do you not think that perhaps that path might be better for little children who haven’t begun TSW? After all they could always chose to stop, though I haven’t heard of anyone wanting to.
I figured this was about Dr. Aron. Look, if people want to go with his regime, I respect that. I will never go on their pages or blogs or personally message them about why I feel their way is not the correct course. If it helps people, I’m glad they aren’t suffering, but I don’t feel it’s correct for myself. As for others, it’s up to them to find his way and try it. I for one won’t be advocating his regime.
We all will advocate for what we feel is right. I advocate for other regimes not containing steriods, for always checking if you have an infection, and to try and find doctors with a holistic approach to eczema since most doctors just want to prescribe steroids for it.
And as much as TSW sucks, some people without a support system like mine might have to go through it. In fact, some are right now. I am not a doctor nor a therapist. I cant force people to do things. It is up to the individual to choose what is right for them, all i can tell them is what TS is doing to their body and how a withdrawal works. And as for the knowing about visiting a hospital, that’s a hard call for anyone not just parents with infants. If any of us feels there is an infection, then a doctor should be seen. If we feel we need vitals checked and blood checked and some help hydrating, then visit the ER.
I am but one person doing what I can to help others get educated about TS use. That is all.
I appreciate your comments about finding a Dr with a holistic approach, allergies and sensitivities are hugely important part of treating eczema. Also very important to note the importance of dealing with infection. It is more difficult as a parent of a baby though to make these calls because they are unable to tell you how they feel.
You got me right, an advocate of the Aron Regime – I had to be right?! Who else gets such brilliant results and inspires people to spread word of how good life can be with eczema? I see a kid or an adult suffering – I want to help. Those kids could have been mine, I could have taken her down that route.
My daughter had all too many nights if no sleep, days of unrelenting agony itch, the oozing, the heat. My poor dear girl, she is a strong as any kid, I was proud of how she coped. I’m as proud now of how she lives, not suffering, not coping, not fighting, it isn’t what made her strong, it isn’t what made me proud. She is kind and stands up to injustice.
I will go where ever I can to try to get people to find a way to alleviate suffering. You are an adult, able to chose but still I wish you see an end to your suffering and I know how it could come about. I’m sure you can imagine how frustrating that is.
You make your experience sound simple but nothing to do with TSW is simple, there certainly isn’t a simple way out – as those communities of support disown peole who chose to find another way. Thank you for engaging with me, I appreciate that takes time and effort, so thank you and goodnight (or good day to you perhaps)
Don’t you listen to a word of that nonsense. Look to the thousands who have healed, who are healing and continue on your journey.
You have been hit hard and your withdrawal has been very dramatic, but you will heal. Continuing to take a medication that has this effect on you is the real madness
Lots of love to you.
Thank you for this, honestly. It’s hard sometimes when people comment and make you feel like what you are doing is wrong.
Since when are you responsible for anyone else’s journey, healing or choices of treatment?! You’re not! And I’ve never ever seen you try and tell anyone what they should or shouldn’t do. I’ve only ever seen you bravely share YOUR journey and YOUR experience which ultimately will help many. Your documentation and sharing will really help people understand what they’re going through. And hopefully stop someone overusing steroids and thinking before applying them. Your withdrawal has been so harsh – that story about going to see your husband made me cry! You are so brave. I really hope that you get a break soon and some relief. Keep going Briana. Your body is working hard to heal all the time – even when you can’t see it X
Such kind and thoughtful words, thank you Louise. I just am so ready to heal so I can show the world that this truly does have a happy ending
Hi Briana ~ I did ask you before about phototherapy – so I’m sorry for asking again.
I recall you answered saying that the sun wasn’t good for your skin at the moment.
I’m just wondering what if you started at a really really low dose?
I know phototherapy doesn’t work for everyone, but it’s suppose to be a natural immunomodulator, anti-itch, anti-inflammatory as well…
Thank you for reading!!
Shame on U soliciting Dr Aron. This girl is going through something so tough I no and how I came here Dr prescribed a class 1 TS for my face when it stopped working and it was the most potent cream how could your method work?
Start me on internal steroids?
Your wrong you can’t ween someone off this stuff because this stuff produces its own form of atrophy and the medical industry new about this in the 70 when they made cortisone creams stronger
They new about this new “atrophy” that could occur.
Taking advantage of people going through this is sickening
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