Today was another quiet day on the medical front, with more of the same as yesterday; mostly spent passing time with my wonderful visitors. Since my boyfriend is my main carer at home, they allowed him to stay longer each evening to get me washed and setted in to bed, which was better for me and took some pressure off the nurses. Outside of visiting I had plenty to keep me busy by getting to grips with the bedside TV/Internet/Telephone that had just been installed in my room, and which turned out to be a lifeline for me over the next few days.
Symptom Watch: Still’s Rash
I thought I’d use this time to talk about something that everyone during my hospital stay found fascinating in terms of the Still’s Disease itself and that is the Still’s Rash. The rash became very prominent during my initial stay at Southport and remained so throughout my stay at Manchester too. Junior doctors, nurses and Rheumatology specialists kept popping in to have a look and even those without much background in Rheumatology were intrigued and asking many questions. I was pleased that people were taking an interest and even I feel like I have learnt something new about my rash and what it means.
In my experience, the Still’s rash tends to appear at the very start of a flare up, alongside other systemic symptoms such as fever, headache, loss of appetite and fatigue; it is usually a good indicator that things are getting worse and that joint involvement will shortly follow. The rash itself manifests in different forms, but I am convinced it is all the same rash:
Faint and speckledy, as if under the surface of the skin, and more visible in certain lights, such as fluroescent lighting, as in the above photographs. This type of rash is usually widespread and appears across the backs of my hands and feet, the bottom of my arms and legs, and across my chest and abdomen. It can often look like the type of rash you get with an allergy but is not raised, hot or itchy. This is usually how my own Still’s rash makes its first appearance, especially if I’m experiencing only ‘minor’ Still’s issues.
Angry, red and hot patches that spread across the tops of my arms, thighs, chest and cheeks. These appear when I have quite a high temperature and/or a lot of inflammation happening in my joints (separate to the joints themselves being hot and red though). The patches are usually well-defined, with just one at the top of each limb or on each cheek. The heat that comes from these is amazing and will quickly warm anything used in an attempt to cool them down. I picture it as an outlet, to release the heat from fevers and the inflammation that is rife within my body. This type of rash usually occurs mid-flare, at the height of disease activity.
Random purpish-red smudges and blotches that appear anywhere, but particularly under my eyes and on my face, neck and chest; they are not raised and do not itch but can feel warm at times. This type of rash seems to be related to my level of pain and fatigue more than anything else, although this is just a theory. It is also usually other people that point it out to me, rather than me noticing it myself. It can come and go, or change appearance, quite quickly.
It was only during this past hospital stay that any connection was made between this type of rash presenting and my level of pain. The Registrar noted that I had the redish-purple smudges beneath and around my eyes, as well as elsewhere, every time he saw me in a lot of pain and so I began to monitor this with the nurses. Lo and behold, each time I requested Oramorph or was due my Morphine, the smudges would appear! It felt like our very own experiment and discovery (highly scientific of course!) and my Rheumy was quite interested to hear about the possible connection too; I wonder if anyone else has noticed something similar in their own rash pattern?
As I said earlier, these rashes appear early on in my flares and are a clear sign that things are going to go downhill with the Still’s Disease. Quite often, if I increase my dose of Prednisolone for a short time on the rash presenting, I can prevent things from getting any worse and keep the joint involvement at bay. So, you can see that it can be quite useful to learn and understand your body’s own rash patterns, (I can’t say that the pattern I’ve described here is the same for everyone). Think about the times when your rash is most prominent and what is happening to your body in terms of Still’s Disease at the time – are there any triggers, any differences in the rash’s appearances between symptoms, is the timing significant? Maybe keep a diary to record details about your rash for a while, especially if you are newly diagnosed, until you start to see a pattern that allows you to use it to your advantage. It might be that there isn’t a pattern for everyone, or at least not beyond it presenting alongside other symptoms, but it is at least worth looking into.
Once a flare does take hold and progress into joint involvement, my rashes and other systemic symptoms tend to gradually ease; perhaps not altogether, but they become less troublesome than the joint problems that follow. Again, I am aware that this may not be the case for everyone, just my own personal observations. If you wish to share your own with myself and others, please comment at the bottom of the page.
I’d be really interested to hear from other people about their own Still’s Disease rash/es; in fact, I have wondered if it might be a good idea to put together a collection of images to compare the differences and similarities between individual cases. A sort of project into Still’s Rash that we could eventually use as an information resource. If anyone has any questions or thoughts on this, please feel free to email me at firstname.lastname@example.org
I am also going to include a brief poll here: