Progression of SCLE to SLE

[Purple-hedgehog]

Hello, I've had SCLE for many years now and I have several over autoimmune issues. But, more recently I had been feeling really odd (more than usual), very difficult to describe, but I felt like my inner core was shaking, lightheadedness and nausea. I was sort of just putting up with it until about a month ago, when one evening after I'd had my dinner it all went off the scale, I felt really dizzy, couldn't beathe properly, extreme nausea etc. I ended up ringing NHS 111 which wasn't exactly helpful as the clinician I eventually spoke to said he thought I was having a silent heart attack, no I wasn't. During the course of the week I started getting what I thought were insect bites on my upper legs, that was until they spread to such a degree that I realised they weren't bites. I then had another episode like earlier in the week, but much worse and ended up having to call an ambulance. I won't go in to the whole thing, as it was really horrible and a pretty scary experience trying to get help and feeling like the whole thing was almost trivialised.

I managed to get an emergency appointment with my GP a couple of days later and she brought in a senior doctor to consult, after seeing the ( purpuic ) rash, which by this time was also on my upper arms. They both said the same thing, that it looked like my lupus had progressed. So, I have been referred to Rheumy and after my GP spoke to the consultant, put on a course of Prednisolone. The blood test show my ANA is abnormal, but all the other bloods were relatively normal, so no liver or kidney issues.

I'm sorry this post is so long! I just wondered if anyone had any similar experience, or can understand what I mean about my "inner core shaking". Anything really!

Thanks!

[LuluM25]

Oh yes, 'the trembling within' as someone poetically called it on this forum once. You feel as though your body and limbs are shaking but when you look at them they're not really. It is also a feeling of weakness and that is what's happening I believe. The Lupus is active and your body is besieged by inflammation and being weakened and damaged. It's also a feeling of intense tiredness a bit different to the usual exhaustion.

You seem to be having increased treatment now from your rheumatologist so I hope Prednisolone will calm down the lupus activity and you start to feel more 'normal'. It may take a while and you may need to start DMARD medication (disease modifying) to get things on an even keel and keep it like that. Best wishes to you.

[MargaretGail]

That was my experience too, SCLE slowly progressing to SLE and particularly the shaking in my own skin which I think is the result of the pure exhaustion we experience.

[hazmatrec]

oh, my! healthunlocked sent me here to try and 'help with prednisolone'. but instead, you've helped me. inner core shaking, the trembling within... this is the first time i've seen it described so i can recognize it. i have an appointment with my gp, one of my usual check-ins, on monday. i've just written these two phrases down to try again to explain. thank you thank you thank you.

i'm under rheumy department, but it's been mixed and undifferentiated with elements of this and that and spikes of antibodies along the way. not that this description will fix anything or give me a name, but it's been a major debilitator, and i've not been able to make anyone understand what's going on!

thank you.

cath tyler

[Purple-hedgehog in reply to hazmatrec]

There's no getting away with it, it really does help when someone else actually gets what you're talking about. It's really difficult to describe to other people. Inner core shaking is the only way I can explain it. Unfortunately my GP looked slightly perplexed when I told her this. I hope it goes well for you in Monday.

[hazmatrec in reply to Purple-hedgehog]

urgle. no telling the gp things today. my husband was working away two weeks ago, and then last week tested covid positive. I did all I could have, but i tested pos saturday night. feeling worse since then. yuck. x