Lupus?

[fairydogmother]

Hi everyone, this is a follow-up to the post I wrote a couple of days ago about permanent makeup/hyperthyroid/immunosuppressive drugs, so many people asked if I had lupus because of the butterfly pattern.

I had the eyebrows microbladed May/June 2018 and the eyeliner tattoo Sept/Oct 2018.

The outbreaks started in Nov 2018, each one lasted about 5-7 days and they happened at 2-4 week intervals up to April 2019. So I guess I had around 6 cycles altogether, the worst 2 were late Dec/early Jan. The hideous photo I posted was taken 10 Jan.

My GP was sure it was angioedema/urticaria, never mentioned lupus at all.

The photo here is how I look today (no, I don't like it either but what can you expect at nearly 69!) but as you can see, no rash, no redness, no huge eye bags, this is pretty much what I look like all the time without a lick of makeup except for the permanent brows/liner that I had in 2018 just before the face outbreaks started.

So, as I know nothing about lupus, does it usually last for just a few months in short cycles as I described?

I can't post the two photos side by side here so I hope you can find the other one to compare and let me know what you think?

[fairydogmother]

well that's a relief!!! I was never pretty, I look too much like my dear old dad, but am used to my face and it does improve a bit with normal slap. I know this sounds like vanity but it's a big hit to self-confidence to see your hair thinning, brows go patchy and eyelashes down to little stubs, a bit of improvement goes a long way for me.

if I asked my GP for a lupus test now she would say there's nothing wrong with me so I'll ask for one if it ever comes back, I'd rather it didn't! x

[fairydogmother]

I can't edit my post but I meant to say the hideous photo was taken 10 Jan 2018, the one on this post taken yesterday, 15 Jan 2019

[fairydogmother]

hmmmm - brave? I am so fed up with the baggy face I am having CACI facials, no.3 this morning, to try not to end up looking even more like dear old dad ... he would have a FIT if he knew I'd spent money on fripperies like permanent makeup & facials! I will read your page when I get back, good luck with the chest infection.

my GP nagged me for years about flu jabs and I wouldn't have one in case it upset my immune system/thyroid, I didn't have one in 2018 so at least I know the face thing wasn't caused by vaccination (Elaine Moore is wary of them)

but I did have it in Oct 2019 as I was travelling and had boosters of all the travel vacs anyway, and none of them have caused any reactions (yet)! x

[fairydogmother]

now that's what I said when they were nagging me to have the flu jab, if I'd caught flu anyway like you did I would never have had the jab again

sometimes things are just coincidence, like maybe my permanent makeup/angioedema was coincidence, but it's hard to break the mental connection

[fairydogmother]

PS another angioedema trigger is insect bites, I react badly anyway and got bitten 3 times on my face in Sept 2018, it could just as easily have been that and not the permanent makeup, I just don't know, I can't do any more to avoid getting bitten but I can avoid more permanent makeup, so it seems the best thing to do

[Hidden]

You look much healthier here and, at your age, Lupus would be less likely unless you already have kidney involvement. But not impossible at all that you have Lupus - only a certain percentage of people have the famous butterfly rash. I have Sjögren’s with Hashimoto’s and a rare overlap connective tissue disease and I sometimes get the butterfly rashes. I’ve also had angioderma and anaphylaxis.

Sjögren’s more commonly shows in older women than Lupus - but there’s a lot of overlap. Both are classed as rare so sadly GPs often miss these. It would require a rheumatologist with a special interest in Lupus or Sjögren’s to diagnose them, or perhaps a dermatologist, not a GP. For best info you may want to look here lupusuk.org.uk/

[jjf255]

You look GREAT! Really. I was one of the readers who asked if you had been tested for Lupus after seeing your original picture. I don't know anything about it other then the sign of butterfly redness across the nose and check area.

You really do have beautiful skin.

[fairydogmother in reply to jjf255]

What a lovely thing to say! I hate my skin, my dad was a Scot and I've got his fair, freckled skin, shows every tiny red broken vein. However even his nose wasn't THAT big, I am just useless at selfies.

I usually wear a little bit of slap to even things out, my sister has our mum's skin, she can wear a ton of makeup and look like a movie star, I just look like a tart if I put too much on. Which is why the permanent makeup! It gets put on exactly where you ask for it, never comes off, you wake up with it and it stays there when you swim.

Thank you for the confidence boost! x

[jjf255 in reply to fairydogmother]

Your permanent brows look very natural and the eyeliner is just enough. I know a ton of 68 years plus women that would give anything to have your skin.

[fairydogmother]

Just a thought ... rooting around the internet for lupus info, seems there isn't the same kind of definite test as for thyroid, but a test for inflammation indicates lupus with a high ESR (erythrocyte sedimentation rate)

My wonderful GP did a full blood panel in Feb last year to see if they could find any cause for the angioedema stuff, I just pulled the copy out and I did have an ESR test, the ref range is 3-20 and mine is 2, flagged as 'low'

Does that sound as though it's unlikely to be lupus, then?

[Hidden in reply to fairydogmother]

Yes low is very good for ESR. Again it doesn’t exclude Lupus but it makes having any rheumatic disease less likely. My ESR averages around 70-90 for example. I also have the very fair, semi translucent skin which shows every blemish and my eyebrows are white blond. I had alopecia aerate as a child and then again twice as an adult but never again since being on a higher dose of Levothyroxine. When my scalp starts to itch and my hair, to moult, I know my dose of Levothyroxine needs another raise.

There are so many autoimmune diseases with multiple presentations - thyroid ones always seem to me to be very straight forward compared to my others so that’s a relief. The only problem I have is that I now seem to know much more about my Hashimoto’s, Sjögren’s and limited Scleroderma than my doctors - which really isn’t great!