Diane’s story – My topical steroid withdrawal syndrome journey…so far
Not so long ago….when life was still normal.
Since a young age I’ve always been the very active type, outgoing, and full of life! I was a fit, healthy PE teacher for 25 yrs, and at the age of 50 was ready for a career change. I trained to become a hairdresser…a childhood dream finally realised! I’ve run a successful business from my home salon for the last 7 years. Then last November 2021, my world started to fall apart…
I had bouts of childhood and teenage mild eczema like so many TSW sufferers and was prescribed topical steroid creams to be applied as and when needed. It was mainly in the usual childhood places…behind the knees and inner elbows. From memory, my eczema fizzled out and I don’t remember it bothering me after the age of about 15.
I was 21 when my brother tragically died, he was only 31, and I almost immediately developed Pompholyx eczema on my hands. I can only put this down to the stress of emotional grief. I was prescribed Elocon topical steroid and I’ve been prescribed this cream intermittently as and when needed for the last 36 years. I had read up on it and used it very sparingly but my Pompholyx eczema persists to this day and flares up regularly, but especially when stressed.
At the age of 30, I became very ill during pregnancy and it took years for consultants to give me a diagnosis. I was prescribed oral systemic prednisolone for a while, as well as NSAIDs and DMARDs. I felt like an experimental guinea pig for so long. I finally got diagnosed with Ankylosing Spondylitis and Crohn’s Disease at age 35.
My pain was intolerable throughout those years, I couldn’t sleep, work and could barely look after my young child. I had only been married for two years and it put immense pressure on our relationship, especially with a newborn.
My Pompholyx eczema flared like never before but this time it also spread to the soles of my feet. Now I found it almost impossible to walk. I wore cotton gloves all day long and wrapped my cracked, blood stained feet in bandages. This lasted for about a year and eventually calmed down.
Over time I would get particularly extremely painful Ankylosing Spondylitis peripheral inflammation, which resulted in having to have corticosteroid injections into my knee, shoulder and sternum.
My immune system was really struggling and just when I thought things couldn’t get any worse, I developed recurrent Uveitis (Acute Iritis). Due to the continuous use of ocular Pred Forte prednisolone to fight the inflammation, I developed cataracts in both eyes as a side effect of the steroid eye drops. Thankfully at the age of 37, I had the cataracts successfully removed…I had never felt more grateful or relieved in my life.
Because I had so many complications, I was one of the first patients in the UK to be offered a Biologic infusion…Infliximab (Remicade)…and I have been successfully receiving it every 12 weeks for the last 20 years. I also took methotrexate subcutaneous injections for 15 years alongside my infusions. It was nothing short of a miracle. It put most of my symptoms into remission. I was able to start work as a PE teacher again, exercise, raise my son and bond with my husband again. I was able to help care for my elderly grandmother and later my mother, and live a normal healthy life.
Thanks to my profession, exercise has obviously always been a massive part of my life and it has been imperative in keeping all my symptoms at bay to this day…which is why what I’m going through now has been all the more difficult to bear.
In 2016 I lost the two closest women in my life…my incredibly courageous mother aged 93, and then just a few months later, my beautiful sister-in law to cancer. This crushed me.
There was a pattern developing…emotional stress + health issues = flare ups.
In November 2020, after 28 years in our marital home, we moved to a new house. It was stressful but exciting at the same time. Most stressful was building up my hairdressing business again pretty much from scratch, as we had moved far away from most of my clients and I had to gain new ones.
I was also ridiculously unlucky that at this exact time I also had some very poor dental work done. It left me in agony for several months just as we moved into our new home.
How my TSW and systemic prednisolone withdrawal started:
Note: TSW Syndrome is an iatrogenic condition…caused by the medication/treatment itself.
In November 2021, after a year finally settled in our new home, I suddenly started developing a severe, itchy red rash on my face and neck with accompanying oedema to the eyes.
For the last year, I have been continually misdiagnosed by dermatologists, rheumatologists and GP’s alike with: chronic spontaneous urticaria, biologic infusion rejection (blood tests have now revealed that I haven’t developed any antibodies so I’m ok to continue with them), possible SLE lupus and atopic/contact/seborrheic eczema.
I was immediately prescribed 40 mg oral systemic prednisolone but only for a week by an NHS 111 GP over the phone, as it was the weekend and I was in such distress at this point. There was no face to face consultation to check whether that was the correct course of action.
Once I completed the course, literally a few days later, my face erupted even worse. I was put back on 40 mg again, this time by a rheumatologist, and told to taper down to 1 mg over 5 months. Just weeks after completing the course, I had an anaphylaxis reaction in April 2022 to an antihistamine eye drop (sodium cromoglicate). I was rushed to A&E and given 100 mg prednisolone and 10 mg Chlorphenamine both through IV.
I was back to square one…put on 40 mg oral prednisolone again and began tapering again. Sadly, I continued to flare up.
Despite being on oral systemic prednisolone that was having no beneficial effect on my skin, two separate dermatologists and four different GP’s (from the same surgery) also prescribed me hydrocortisone, Eumovate, Elocon, Elidel, Daktacort and Lotriderm.
None of these had any positive effect, despite applying as instructed. Now I realise just how much they have worsened my TSW Syndrome symptoms.
I kept returning to my doctors for further help and it was obvious they too were still struggling to find an answer to my symptoms. They prescribed me extremely high doses of antihistamines, Cetirizine, Fexofenadine, Promethazine…but again they made my symptoms worse. Antihistamines dried my mouth out, caused headaches and at such high doses actually made me itch even more. The last thing I needed was to make my itching even more unbearable…this is one of the worst symptoms of TSW.
The next desperate step, as I was now literally going insane from sleep deprivation from the unrelenting itching, was to prescribe me either a sleeping aid, anxiety aid or anti-depression aid, with the intention that it would stop me scratching myself to death during the night. Zopiclone, Pregabalin, Mirtazapine, Propranolol, Diazepam were all prescribed…and I was actually told to decide for myself which ones to take! It was like being offered pick n mix!
After a period of time trying all but Mirtazapine, and still getting no relief, I realised if I carried on this way I would be sectioned. I was now at my lowest point ever. My husband would find me slumped on the floor in the shower day after day in tears. All these medications were just exacerbating all my symptoms and causing more mental instability.
After months and months of Googling trying to research what on earth was going on with me that no medical professional could explain, I came across ITSAN. From here, I found links to other similar communities and they were literally the lifeline I had been praying for. I no longer questioned my sanity…I actually had a real medical syndrome. And the thousands upon thousands of other people, young and old who were going through this exact similar horrendous experience was staggering and ultimately heartbreaking to discover.
I eventually decided to see an endocrinologist privately…no GP had ever suggested to refer me to one, yet they are the experts when it comes to all things steroidal.
She has become the only consultant I have come to trust and her conclusions matched my own. I had most likely suffered adrenal fatigue otherwise known as a ‘crash’ due to all my health and emotional stress over the years, and my adrenal glands have now ceased to produce cortisol whilst I’ve been on all these steroids completely unnecessarily. I have sadly experienced a fair share of emotional turmoil in my life, which I believe has been a precursor to my sudden unexplained flare up in November 2021. Experiencing huge personal challenges, when coupled with health problems was simply too much for my body to cope with, and even the slightest bit of negative emotional thought can trigger a flare up now. This has been my greatest struggle. So I’m working massively on my mental health and doing all I can to try and chillax, which isn’t easy when your face is continually on fire and you’re still averaging 4 hours sleep a night. Sleep deprivation has literally been torture and it prevents your body from healing. My mental struggle has often been even more challenging than the physical pain.
Through all the advice I had read on TSW, in June 2022 I decided to go cold turkey from all topical steroid medications, as well as all the other medications above. The oral systemic prednisolone I unfortunately have to continue to taper. My endocrinologist explained it is far too dangerous to just stop these as I’ve been on them for far too long. It is highly likely my adrenal glands have stopped producing cortisol naturally after all this time. Once I reach a low enough dose I will be put on less damaging hydrocortisone tablets with a view of completely stopping if my future cortisol tests confirm my adrenal glands are functioning on their own again.
Over all this time I have had to give up my job, my passion…my income. All strenuous exercise which kept my arthritis in check has had to stop, so no HITT training, no group exercise classes, tennis…everything I loved doing for most of my life. I have felt locked at home, even more susceptible to covid and other infections and I have lost so much confidence making me feel extremely insecure.
I long to get my sparkle back…I feel it’s still there in me somewhere. I know my journey is far from over…my inflammation is spreading in crazy places…but I’m feeling unusually stronger as time goes on slowly weaning off these soul destroying drugs.
Zingers/sparks in the face
Mental health decline…
Loss of confidence
Loss of sense of self worth
Isolation from friends and social circles
Lack of support from medical professionals
Long gentle walks in nature
Exercise with limits
Listening to your favourite music
A good book
Starting new hobbies
If only my GP’s and consultants had tried prescribing all of the above first!
Most importantly, I really wouldn’t have gotten this far if I hadn’t found ITSAN and all the amazing people online sharing their incredibly inspiring stories of strength and survival.
Most helpful resources:
International Topical Steroid Awareness Network
Interview with Dr Marvin J Rapaport
An Overview of TSW (Topical Steroid Withdrawal)
TSW (Topical Steroid Withdrawal) Case Example: Santiago Aufranc
To my closest friends who have known what I’ve been going through…those who never judged me or made me feel like I had to explain myself, understood why I had to distance myself sometimes yet still checked up on me in my darkest moments, who showed empathy and understanding….and those who made me laugh when I needed it most…I love you.
And of course both my husband and son…my absolute rocks always. My son who has taught me how to meditate and never fails to put a smile on my face. My husband who has tirelessly cared for me and dropped everything when needed, to ensure I’m as sane as can be, as pain free as can be and as happy as can be throughout this ordeal. You are both my world.
Thank you for taking the time to read my story.
I hope it helps…even if it’s just one person.
-Diane, 4 months TSW
I’ll be back…whatever it takes!
“You’re not a victim for sharing your story. You are a survivor setting the world on fire with your truth. And you never know who needs your light, your warmth, and raging courage.”