This is a blog post about my skin over the last three months.
If I'm being perfectly honest, when I sat down to write this, I felt completely overwhelmed because so much has happened, I didn't know where to start. I suppose starting at the very beginning might be a good idea...
Before I say anything else about my skin, I don't want anyone to worry because I haven't had a TSW flare – it was just a lot of bad luck, with many things happening at once and my poor body having a bit of a meltdown. Saying that, even though it wasn't a flare as such, I do believe that my skin reacted the way it did because of my steroid use and TSW. I am writing about what happened because five years ago, when I started sharing my skin story on the internet, I wanted to use this blog not only as a resource that could potentially help others, but as a medical journal of sorts. Because of what we have been through with our skin, we fall through the gaps so no one has a clue what to do with us – that is why we have to help each other out by being as honest as possible when it comes to our skin and how it reacts to everything. One day, our journals and photos will help shape the future of our condition – I say condition for want of a better word, as TSW is not a skin condition, but you get my drift.
Also, I want to add a disclaimer to say that I am not medical professional and anything I say isn't intended as medical advice – it's just for my peace of mind that everyone reading this knows that. Unfortunately, I don't have a diagnosis from a medical professional, and anything I mention in this post is my own guesswork. Another very important thing to mention is that this is not intended to make anyone panic about using antibiotics – I certainly don't want you to think, 'Cara used an antibiotic and had a terrible reaction, therefore I cannot use them'. Using antibiotics is sometimes a matter of life and death and the last thing I was to do is scaremonger. My reaction is not your reaction basically, and only ever seek medical advice when it comes to anything regarding infections.
Right, now that's out of the way, all that's left for me to say is brace yourself, because judging from the sheer volume of notes I have made (and photos I have taken) over the last three months about my skin, this is going to be a long one, so grab a massive cup of tea and read with caution, because some of the photos might be a bit of a trigger.
I'm still trying to mentally process what happened to my skin over the last three months, but to put it in a nutshell, I have nearly recovered from a very bad allergic reaction to the antibiotic Flucloxacillin after coming into contact with a trigger that I believe gave me something called folliculitis. I'll elaborate...
On Sunday 21st February, I came into contact with a trigger. I will not be disclosing what the trigger is – I know that's vague, and I'm sorry because I wish I could tell you, but I can't. Please don't be scared though, because it's not something you'll ever come into contact with as there is only one of it. I'd come into contact with lots of similar triggers and had absolutely no issue, so I didn't think I'd have any kind of reaction – it's just this particular one that was the problem. I remember a few hours after coming into contact with it, I noticed a few raised bumps on my face and arms, but didn't really think anything of it at the time and thought it might just be a couple of heat bumps or something, so I took an antihistamine before going to bed. The following morning, I woke up and my arms, hands, stomach and the lower half of my face were covered in raised bumps and pus-filled spots. At first, I was naturally a little bit shocked when I saw them, but then I remembered something similar in my teens when I got bouts of infected eczema and just thought it was something like that ... until I started to worry that it might be eczema herpiticum, and if it was that, I knew I needed to act fast. I called the doctors straight away, sent them lots of photos, and told them that I thought it could be infected eczema, or perhaps even eczema herpiticum. She then proceeded to tell me something which almost made it worth going through all this in the first place. She said the magic words: 'Your skin is not eczematous and is in good condition'. I feel like having that statement framed. After a bloody lifetime of having my skin written off as eczema, it was music to my ears hearing an actual medical professional say that I don't have eczema.
Saying that, she then proceeded to tell me that she thought it was bed bugs, but due to where the spots were, and seeing photos of what actual bed bugs bites look like online, I knew it couldn't be that. She said that regardless of whether it was bed bugs or an infection though, the treatment for both is the same, and so she prescribed me the course of antibiotics. She also advised me to use steroid cream and emollients. Naturally, I told her about TSW, but that went in one ear and out the other – although I'm willing to overlook this BECAUSE SHE TOLD ME I DON'T HAVE ECZEMA. Probably goes without saying that I declined the steroid creams and emollients. Don't really understand why steroid creams or emollients would ever be a good idea for either an infection or bug bites.
And so anyway, without even giving it a second thought, I started taking the antibiotics (Flucloxacillin) – ones I'd used without an issue in my teens (for the aforementioned infected eczema). Instead of getting better, from that point, my skin took a really bad turn, and by the evening, my skin started getting really irritated, with red spots and weird rashes coming up all over my body. The following day (Tuesday 23rd February), my skin continued to get more angry. Scared, I spoke to the same doctor, who was adamant it was bed bugs, although I knew it couldn't be – I literally would have needed a swarm of 8,000 invisible bugs on my body for that to be a possibility. Also, by Tuesday evening, I noticed that the lower half of my jaw/neck had swollen up, which was very scary to see as it looked similar to the oedema I'd experienced during TSW. The next day (Wednesday 24th February), I woke up with angry hives and welts all over my body, and my jaw/neck at this point was very swollen, to the point where my face forward looked square. For the first two days, I didn't even consider that it could be the antibiotics that had caused it, because I'd previously used them when I was in my teens, but by the third day, I started to get this awful gut feeling that they were actually the reason, and after doing some Googling about hives, I discovered a condition called Angioedema, and suddenly everything made sense.
***I am just going to stop for a moment and backtrack a bit to say that since getting better from TSW nearly six years ago, I've had two mild bouts of hives (I discuss my experiences here and here). The first time they was triggered when I had sinusitis (a sinus infection), and the second time was last year due to extremely hot weather. Both are very common triggers for hives.***
Now that you have some background, when I found out about Angioedema, and read about it, I knew that was exactly what had happened to my jaw and neck. Essentially, Angioedema is swelling usually as the result of an allergic reaction and can be accompanied with hives or happen on its own. One of the main causes of Angioedema is an allergic reaction to medication, including those with penicillin, which the antibiotic I was taking contained. The day I learned about it on the Wednesday (after using the antibiotics for three days), I spoke to the doctor, who agreed that this is what she thought I had and advised me to stop using the antibiotics straight away, which I did. This doctor also said something which surprised me: she said that sometimes you have to trust your gut and do what feels right for you. She didn't prescribe anything to me but time. I think I've found my soulmate.
I immediately stopped taking the Flucloxacillin, and for the next few days, my symptoms remained unchanged (but were at least not getting worse). On the evening of Sunday 28th February, I suddenly noticed a change for the better, with my skin drying up nicely and everything calming down. It was also very satisfying seeing whole areas of my body covered in thick dry skin.
At this point, I have to say I was quite amazed by how I was handling it all. There were definitely moments of panic, but for the most part, I was pretty calm and accepted it was just a lot of bad luck and something that would get better over time. My legs were also basically back to normal (apart from mild irritation behind my knees), with most symptoms concentrated on the top half of my body.
Unfortunately, the following day (Monday 1st March), my skin started to deteriorate. After the previous day, I'd been lulled into thinking I was improving, but over the following week I experienced things that threw me mentally and actually terrified me. I had symptoms unlike anything I'd ever experienced with eczema or TSW – and that process certainly throws a lot at you. My skin was very irritated and red on the top half of my body, but it was a very strange surface itch, with odd, thick rashes on my arms that looked like they had been stuck on my skin (I'd liken them to red beef jerky – I know that's such a weird description!) and this intense redness in large patches on my back that was bizarre. What worried me the most over that week was the heat I could feel in my back – and I don't mean warm, I mean boiling to the point I could feel heat coming off it with my hand at least 10cm away from my skin. Whilst all this was happening, my temperature was low, and on Thursday 4th March the glands in my neck were also very swollen, so I started to become very scared that I had a serious infection and the large patches of red skin were something I shouldn't be ignoring. I definitely had some very dark Google searches where I even thought I might have meningitis or sepsis, because it didn't really feel like a skin condition and instead something wrong internally. It wasn't a very pleasant experience. During that time I spoke to doctors every single day because I was at a loss, but I got no answer - they just said to use steroid cream and moisturisers, which I obviously declined. Saying that, there were some improvements happening, with the swelling around my neck and jaw slowly getting better.
By the end of the week, my skin was very sore and dry and these large hot patches of skin were also very painful. Trying to take something positive from it, for many years I've felt very detached from the Cara who went through TSW, and this experience made me remember exactly what it feels like to have a chronic skin complaint, and how limiting it can be. Even more interesting, I experienced moments of thinking how blissful it would be to be able to use a steroid cream and make all the pain go away.
This is what upsets me the most. I had a very bad reaction to an antibiotic, but because my skin has been compromised by steroids, that option has been taken away from me. Using any kind of immunosuppressive medication during this time was never an option for me as I will never go anywhere near them again, if I can help it – although obviously if I had anything that threatened my life, that would be a different story.
Also, you know all the things I tell you not to do when it comes to TSW; like taking it day by day and not overanalysing your skin? Yeah, I didn't do either of those things and I panicked about the future and dissected my skin within an inch of its life :)
I cannot begin to describe how much I've abridged what happened to me over those first couple of weeks, but if I told you everything, this would literally be the size of a book. It's like the allergic reaction from the antibiotics made me hyper sensitive to everything - like Pandora's box had been opened, and I'd just have to ride it out till the reaction had burnt out.
On Wednesday 9th March (two weeks after I stopped using the antibiotics), I noticed that my skin was suddenly making lots of lots of improvements and the large rashes on my back were breaking up and less angry ... but as the top half of my body continued to improve – now at a rapid rate – guess who decided to join the party? Up to this point, the lower half of my body had been relatively calm. I'd had welts on my legs that came up after I started taking the antibiotics, but they all calmed down quickly and all I was left with was a little bit of irritation behind my knees. Well, that irritation started to spread over my legs, and by Friday 12th March the skin on my legs was SO sore and chapped. When I walked it almost felt like a constant Chinese burn, and I had rashes that were exactly the same kind as the ones I'd had on my arms – red beef jerky ones that looked like they had been stuck on. After that, over the next few weeks, my legs started to get better, and I only had minimal issues on the top half of my body. The swelling around my jaw and neck continued to improve, and the redness was calming down.
***On a Covid-related note, I also wanted to say to anyone going through TSW right now, I am sending you big hugs, because wearing a face mask when the bottom half of my face was bad was just so uncomfortable and sore***
Over time, my skin continued to improve, and by Monday 29th March, my skin was nearly back to normal and I no longer had pruney fingers. I also noticed that after the weird rashes on my legs had gone, for about a week after, there was a faint purple mark (like a shadow – the camera couldn't pick them up) exactly where the rashes were, before all traces of it disappeared. The only areas that needed to make a full recovery, where healing was more stagnant, were my hands and chin/jaw area ... and guess what I used in those areas for over ten years? This is where I think my steroid/TSW history comes in as I think those areas have been weakened by my steroid/immunosuppressant use, so it's just harder for my skin to recover there. Of course this is all just guesswork, but it's too much of a coincidence to ignore. It has also been very trigging for me seeing the skin in those areas, especially my chin/jaw, come up again.
As I draw the first part of this to a close (yep, there's more...), I think what happened was that I basically just had a rather bad allergic reaction to the antibiotics, and because time was the only option available to me, it took much longer to get out of my system and calm down on its own. Also, I used the antibiotics for three days – three whole days (around ten tablets) taking a medication my body was trying to reject, so honestly I'm really not surprised what happened.
So this should have been the end of it, and from that point, I just kept getting better and better till I'd made a full recovery – but I didn't, because I came into contact with the trigger again.
You are probably thinking I am mad to even think about going near it again, but it's a little more complicated due to what the trigger was, and because even though my gut was telling me it was that, as I'd never experienced a reaction to anything like it before, I thought it might be something else that I'd come into contact with around the same time – and honestly, I think for my own sanity, I needed to at least know for sure, because otherwise I'd always be wondering what it was.
Well, my gut feeling was spot on, because when I came into contact with the trigger again on Tuesday 30th March, I had an identical reaction, with pus-filled spots and lumps where I'd come into contact with the trigger, so the areas that were affected this time were the lower half of my face, my arms and hands, and my stomach. It's mad how similar the reaction to the trigger was both times, but the only difference this time around was that I didn't take antibiotics so it was much easier to deal with, but still incredibly stressful.
This time, after only a couple of days dealing with the pus-filled spots, they disappeared, only to be replaced (in exactly the same areas the spots were) with a milder version of the weird rash that I'd had first time around on my arms and legs – although this time there were no large red boiling hot patches and no swelling. My back and legs have remained clear.
Since then, it's just been the case of slowly watching the rashes fade, and my skin return to normal.
I haven't even 'scratched the surface' of everything that's happened over the last three months, and there has been a lot of unforeseen hurt, anger and stress as a result of it, which I will not go into. I think I can still safely say I have recovered mentally from what I went through during TSW, but I think you'd have to be made of stone not to be a little thrown by this recent episode. There has been a lot of anxiety, trying to deal with this on my own, without any kind of help from doctors, and I just feel so angry and let down by the medical profession. Like I said earlier, we have fallen through the gaps. During this time, I have spoken to some nice doctors about my skin, then others that have belittled me, been disinterested and, to be perfectly honest, downright rude. One doctor, when I told her about what I'd been through with TSW, and my reasons for not using steroid cream, said, 'Well, what else do you want me to do?'
Until they actually study TSW, and those who end up victims of this awful and completely preventable drug withdrawal, they'll never be able to offer us a clear picture of how our body will react to anything, and so we will continue to be misdiagnosed or treated like we don't have a clue what we're talking about, and just someone who's been looking too much on Google. I'm so bloody tired of having to be my own doctor – I want someone to put their arm around me and understand. It's so dangerous having to diagnose yourself, especially if it's something serious, but seriously what option do we have left? I don't know how many more times I can try and fail to explain TSW to someone who should be interested in hearing what I have to say about it, but they just aren't. The only way I can combat my feelings of disappointment is to make sure that TSW is recognised as soon as humanly possibly so one day those who have suffered because of this medication will have people they can see – people who understand, and give us actual answers instead of ignore us. Literally no one has a clue what to do with us when confronted with skin that has been compromised by steroids and all this medication.
Over the last three months, aside from frantic Google searches and calls with doctors, I have had a blood test and a skin scrape, which came up with nothing – but by the time I'd had them, I think any of the initial infection had cleared. In desperation, I also used an insecticide overnight all over my body called Lyclear, and I cannot tell you how weird it was using a medication all over my body for the first time in many years. The feel of it, accompanied by the medicated smell, really took me back to my eczema days. I think a lot of us blank out traumatic memories with our skin, especially if it's something we've had to deal with for many years, and it's amazing how sad even the most insignificant of things can make us feel. To anyone, saying the memory of putting medication on your body wouldn't be a big deal, but to someone who has had to deal with a chronic skin condition will understand how triggering it can be.
At the beginning of this post, I mentioned that I believed the initial reaction I had was called folliculitis. I came across it last week after accidentally stumbling across an article on keratosis pilaris (KP) as the skin on my lower arms and stomach looked like chicken skin. I've had a history with KP, having had it on my legs and the tops of my arms before. Well anyway, in the same article where it talked about KP, it also mentioned folliculitis. Both KP and folliculitis deal with the follicles, and so what I believe happened is that the trigger was bacterial-related (my gut feeling from the beginning), which got in my follicles and upset them, causing the folliculitis. Then, as the bacterial infection disappeared, I was left with KP as the follicles had been severely compromised by the trigger. The skin on my jaw/chin and hands is just unfortunately weaker due to my steroid use, so any trauma in those areas (in this case, the allergic reaction to the antibiotics) just needs longer to get better than other parts of my body.
This whole experience has also left me with a few question marks – one being what I should do about the Covid vaccine, as both the Pfizer and Moderna vaccines (the two most commonly given in the U.K.) contain penicillin, which I might be allergic to. It has also made me question whether this potential allergy to penicillin was a by product of going through TSW, because when I'd used the same antibiotic in my teens, I was fine - OR whether if when I used it in my teens, any reaction to it was hidden because I was using steroids and immunosuppressants (Protopic) – that's what my mum thought and it would make a lot of sense.
And so, here I am, just over three months since I woke up with pus-filled spots and about 95% better, with an even deeper gratitude for my skin and what it is capable of. I have an appointment at an allergy clinic next week, and I'm hoping that I can gain more of an understanding of what I'm allergic to, and maybe find a better way of dealing with any allergic reactions or hive breakouts – ie stronger antihistamines. Although saying that, the mild antihistamines I used on and off during this whole skin debacle did absolutely nothing to help.
Something I want to end this very long post by saying is that I find it so fascinating how easy it is to lose perspective when you're in pain. Your mind and body just adapt to whatever situation it is presented with, so it's easy to lose sight of how far you've come. Even though I could see I was making improvements day by day, I couldn't feel them because I was still uncomfortable. I remember when I saw my mum after a week, she couldn't believe how much better I looked, but because I was still uncomfortable, I didn't realise. That is why photos are SO important – especially with TSW, because the other thing about pain is that it's easy to forget what it was like when you're no longer in it. Photos offer us a reminder so we can celebrate every single positive change, no matter how small. Like a little seed burrowing in the earth, at the beginning, you can't see how much it is growing, and changing – you have to give it time, love, and put your faith in the fact that one day it will rise from the darkness and bloom. And one day, it does.
Sorry I was not able to share what the trigger was, but trust me when I say that trigger will never be coming anywhere near me again. Lesson learned.
It gets better.
Cara x