My Personal Topical Steroid Withdrawal Journey Diary
How my treatment was planned, the results it has achieved and how it has affected me and my confidence
Author: Andrew – Company Director
A short diary of my personal journey to eradicating the demons of eczema and steroid cream usage over many years. This little diary has been written in order to document my journey as I remove something that I know now, has been damaging me, almost since birth. I am 56 years old now and have suffered with eczema since birth. Over the years, this has reduced significantly, however, my face and upper body is always prone to flare ups, especially after shaving. I have since found, this is almost certainly linked to my use of steroid cream throughout my life. Looking at some of the research into this, called Topical Steroid Addiction, it is apparent, that the journey to removing this harmful cream from my body, may not be an easy one, but one which must be done. Here is my first two weeks on this journey.
Thursday 29th April
Today was the last time I used the steroid cream I had used since I was a very young lad. I remember being smeared in it to within an inch of my life everytime I had a bath. Going to bed all slippery from it in my PJs. In the intervening years, as my eczema got better, I only really needed to ease my skin on my face, and after shaving. It was something I did that provided almost instant relief from the ravages of shaving. Shaving, just dried out my face, and skin care was not something I’d even considered as a man, not even moisturiser. I had, over the years got a hint of what damage the steroid cream was doing to me. If I had run out of the ointment, within 2 days, my face would go red, become very angry, and then more recently, the bags under my eyes would appear, and then swell. But, never fear, steroid cream would come to my rescue, and within a day or so, all would be good with the world again.
I knew nothing of topical steroid addiction. I just put the angriness and swelling down to not getting the treatment I thought I needed. A while back, I was advised that using steroid creams on my skin would have serious, and very bad outcomes for my skin, and that I needed to stop using it altogether. I remember the anguish I go through every time I miss a “dose”, and this filled my head with dread. Come on, what damage could it do I asked myself on more than one occasion. I had obviously dismissed the fine veins that had been with me since a very young age, and that as I got older, looked like I was an alcoholic. I had also dismissed the times, when I had banged my head or face on a not fully open car boot, or cupboard door, and my skin would peel open, like a tearing a bit of paper up. No, this was just me, and how I was? Thursday 29th April, was the day I was determined to start the journey to weaning myself off of steroid treatments. I was scared, worried about what would happen, and worried about what was next.
Friday 30th April
I consulted Chrystal at Le Sands Clinic and did another skin analysis. My skin was way out of balance, and was seriously dehydrated. I was recommended that I undertake LED light treatment, plus a morning and evening regime of Skeyndor AquaTherm, a treatment designed to take heat out of the skin, cool, and moisturise. It sounded fantastic. I was worried that dehydrated skin was result, and that this option would help overcome this. I felt great afterwards, and determined to see this through, and finally wean myself off of the nasty treatments I had used for the past 50 odd years. The other benefit was how relaxing the LED treatment and facial actually was.. wow!
Saturday 1st May
No reaction as yet.. woo hoo! My skin felt great. It was smooth, very relaxed, and not at all as I had feared. My morning and evening treatments are actually being kept up, and I am remembering to do them… that’s a major bonus!
Sunday 2nd May
Still feeling good. Maybe, just maybe, I may have dodged a bullet with coming off of the steroid cream. Am taking anti histamines too just in case. Morning and evening routines are progressing well
Monday 3rd May
It is now 4 days since I last used that nasty stuff. Am feeling pretty OK, although am having a few hot flushes but nothing really to worry about. I may just have beaten this!
Wednesday 5th May
Oh crap. I’ve woken up and my forehead and eyes are really, really dry, and a bit stingy. I hope this isn’t a reaction. As the day goes on, I feel my eyes start to swell up and those bloody bags are getting big again. Surely, after 5 days, I shouldn’t get a reaction like this. The day progresses, and I feel very hot, and my skin is really angry. I feel my eyes close up a little from the swelling. This is not good. Head back to Le Sands Clinic, and undergo another LED light session, plus hydration to try to ease things. That really helps, but I head home with very red head, and looking like I’ve been hit in both eyes. Not what I’d envisaged. There must be more to this than meets the eye. Surely, I can’t be the only one in the world to suffer like this when withdrawing my steroid cream? Can I?
Thursday 6th May
Woke up. Eyes swollen even more. Face very angry and red. I look like a red version of Shrek. My face is not itchy though which is really weird. Just hot, just angry, just swollen. I get to the office, then things ramp up a notch or 100. If I thought I looked like a red Shrek this morning, I look 10 times worse this afternoon. More LED treatments, more facial products. I feel like a freak. I cannot look anyone in the eye. The hit to my confidence is enormous. I feel so self conscious, and this is made worse when having to go to Coles. Everyone is staring at me. They are probably repulsed. They probably think they will catch whatever I have. They are probably glad they are not me. I put my head down as I walk through the aisles, not making eye contact with anyone for fear of scaring them. This is the low point so far. I need to get back on my steroid cream, surely, that will take this away and bring back the old me. The confident me. The perfectly imperfect me. The amiable and friendly me, not the grumpy person who has had every bit of confidence oozing out by the second. This even affects my work. I re read emails I have sent, and they are devoid of personality, devoid of warmth, devoid of humour. How the hell can a Shrek face affect the way you write..? I end the day, really down, really grumpy. We research what the hell this can be. Ah ha.. there is a known condition that affects people in exactly the same way as me. It is called Topical Steroid Withdrawal. Steroid creams, we read, can do enormous damage to the skin, and in effect, suppress the skin’s immune system. Prolonged usage of it, will mean, on withdrawal of the cream, the skin has no protections to it. The skin’s balance of oils is shot to pieces, and often, hydration is also reduced as the skin’s oils run amok. The only really long term treatment is withdrawal. This can take any between a few weeks, and months and months. Not what I wanted to hear. The recommended treatments are exactly as we had been doing, and the wonderful team at Le Sands Clinic had advised.
Friday 7th May
Woke up, my eyes hardly opening through the swelling. That set me off again on a downward spiral. Routines were done, and that seemed to provide a little relief. The redness has gone down my face now. My eyes look as if they had been hit by a hammer. Who knows where this will end up.
Saturday 8th May
No improvement, and now my angry skin is getting angrier lower down on my next. This is still really affecting my confidence, and I find it difficult to look anyone in the eye. I am not sure how much I can stand of this, or for how much longer. I am tempted to go back to my steroid cream, to give me some relief, but no, it is that which has done this damage all of these years. It would be like an alcoholic having just one drink to ease the pain. No, I must remain strong, despite this obviously affecting me, my work, my social relationships. Another Omnilux LED Light therapy session, and this brings a little immediate relief. Today I also started a course of oral cortisone steroids, the research into this condition indicates that a short, and reducing course of steroids are not likely to keep my skin hooked on them. So long as the course is short, and reduces after a week. Dr Saliba prescribes the course, and I start on them. Keeping fingers crossed.
Sunday 9th May
Day 2 of the additional steroids and no real improvement as yet. In fact, my neck is getting worse. The angriness in my skin is spreading lower down my neck. When will this end?
Monday 10th May
Oh my word, my face feels a little less tight, and definitely not as angry this morning. I am religiously keeping up with my home care skin routine; morning and night. I am even managing to shave now. My neck is in a bad way, but, as the days pass, I am confident this will ease now. The downside to today, is that my skin is getting really flaky. Gross! I have read and been told that this is really a good sign, and a sign that my skin is starting to recover. This will not be a pleasant phase of my recovery.
Tuesday 11th May
Wow, my face has cleared. The Puffiness in my eyes has gone, but they are incredibly dry and look like an elephant’s eyes. They look bloody awful. I double and treble down on my Skeyndor Aqua Therm moisturising cream. In fact, I moisturise every hour or so. It is weird, every time I do this, within 10 minutes, the skin around my eyes and upper cheeks just sucks the cream in and my skin feels like glass paper again. It is relentless, but shows how much damage has been done over the years. Keep going…
Wednesday 12th May
Really great improvement today, and my neck is starting to ease. I almost look normal and not like a red Shrek any more. I can feel my inner confidence coming back. The dryness in my skin is not quite so bad now, and I no longer have to use my Aqua Therm every hour! I drive back to Le Sands Clinic and have another Omnilux LED light therapy. This, apparently, helps to repair the deepest layers of my skin, and will be critical in me helping completely remove steroid cream from my life. The idea is that once my skin’s natural barriers are built up, I will retain hydration better, and also be able to withstand times of dryness.
Thursday 13th May
Woo Hoo – I am now almost completely rash free on my face and my neck. One massive thing I’ve noticed too, is my wrinkles around my eyes are now barely noticeable. That is one thing I didn’t expect to find. In fact, my skin looks fuller, and healthier. My big worry, is that this is only down to the oral steroids I am still on. The critical time, will be tomorrow when I start halving my dose for a few days, then halve again so that I am free of them by next week. This will be a real test I fear. On the plus side, there are some very visible signs that my skin is healthier, and who knows, maybe better placed to withstand real life. So far so good.
Friday 14th May
I will complete my journey now on my own, and continue with the treatment plan that Chrystal and Dr Saliba has given me. I also up my treatment today, with LED light Therapy, a deep moisturising facial, and even getting rid of any dead skin I have shed as part of this with an exfoliation. My confidence levels are back to normal, and I feel human again. These past 2 weeks have been difficult. I won’t candy coat this, really difficult, however, I can feel a completely new future coming on, and one where I am not dependent upon steroid cream. Thank you for listening to my current journey, This is the start My Next Phase, a phase in which I do not suffer issues with being able to look people in the eye, can stand proud and tall, and not have to bloody well scratch my face, or look like red Shrek again.
