Monday, December 19, 2011

Why couldn't a butterfly rash look like this?

UPDATE 13/12/12  A lot of people are finding this post looking for images of butterfly rashes (malar/lupus rash.) You'll find a picture of me with a real lupus butterfly rash photo here.

Those of familiar with autoimmune disorders will know from the title where this post is going. For those of you who don’t – Butterfly rash = lupus.

For a while I’ve been getting a whole host of symptoms that couldn’t be explained by any of my existing conditions, one of them being a rash across my cheeks, known as a malar or butterfly rash.

I think I’d been a little bit in denial about the new symptoms. I ignored a lot of things or dealt with them by not really dealing with them – for example, some of you will remember the day when I began to have a large amount of bleeding from my mouth. After spending some time spitting blood in the sink, I made an appointment with my dentist. Part of me (and many of my friends) knew very well that I should be seeing a doctor, not a dentist at this stage, but this was a convenient way for me to pretend I was dealing with the problem without really dealing with it. Incidentally, the same day I saw the dentist, I saw my dermatologist and when I mentioned in passing the rash on my face (which I didn’t have that day) she looked alarmed and asked if I’d been tested for lupus. I avoided that by saying yes, I had been tested for lupus and just didn’t mention that my last ANA test was seven years ago and it was positive. I convinced myself the face-rash was just the rash I get from sunlight (which in hindsight was slightly ridiculous, as a sunlight rash is also a symptom of lupus.)
Anyway, dentist noted I had a lot of inflammation and a very dry mouth and said he thought it was either an “autoimmune something” or a result of meds.

Skip forward a few months and new symptoms were becoming harder to ignore. Dry eyes were meaning I was getting vision problems, pins and needles in my hands and feet were making my walking a bit wonky-donkey, and my hands started turning blue when I got cold. I was covered with skin ulcers and blisters, most of which quickly became infected. I finally bit the bullet and went to the doctor.

I knew very well that my symptoms indicated lupus, but I avoided dealing with the problem by convincing myself it was sjogrens disease. Lupus and Sjogrens disease are actually very similar. There’s a huge overlap in the symptoms, though I believe the butterfly-rash and sunlight rash are more related to lupus.

A month ago I saw my rheumatologist. After listening to my list of symptoms, he told me they all fit with lupus. At that stage he thought it might drug induced lupus from my Psoriatic Arthritis medications.
On Thursday I saw my nurse. My bloods test showed quite clearly not drug induced lupus, but lupus lupus (SLE.) She went back over my notes and said she suspects I may have had it undiagnosed all along, which would explain why I’ve been so unwell and taken so long to respond to any medications.
I think the moral of the story here is if you’re getting sick, don’t ignore it. Pretending it wasn’t happening did not make the problem go away – in fact I just got sicker. I try not to play the “what if?” game. It’s hard when I look back on things and say “what if this had been picked up ten years ago?” but as one of my good friends pointed out today “better now than letting it progress for another ten years.”
I’ve been really scared this year. Scared by the new symptoms. Scared it might be something serious. Scared to get a diagnosis. Scared I might NOT get a diagnosis and just be left wondering.
Well – new symptoms are scary whether you acknowledge them or not. If it’s serious, it will still be serious whether you ignore it or not and in the end, a diagnosis is just one step closer to treatment.
Turns out treatment for me might be as simple as adding just one more drug. I’ll know more in the new year. In the mean time, if you’re worried about something – go to the doctor. You don’t want to be asking “what if?” a few years down the track.
Little Miss Autoimmune

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