Newbie here

Thanks

Hi,

Thanks for welcoming me Sorry if I wasn't clear about my diagnosis. My symptoms were that I get chilblains on feet at winter time every year and excessive tiredness. My GP had always struggled to diagnose what it was, he just put it down to the cold. :worried:

Anyway, this year I started getting them on my fingers, so he referred me to an expert. I had some blood tests. Turns out I had an abnormality. He thought it was lupus, but he said he couldn't confirm it, so he then passed me on to a national expert which my appointment is unfortunately in March :sad:

Meanwhile, we (my mum and I) saw another consultant who said it was definitely lupus and she performed a skin biopsy which im waiting for the results now. She said she would put me on antimalarial drugs. I haven't yet started treatment.

Alex

PS. Hi Clare.T - haha, well turns out my mum does have some medical training, so she's gonna do it

Thanks!

Hi Lola!

Thanks for all the info - really appreciated Yeah, I totally can relate to your point of explaining it to friends (and family and teachers ). Right now I feel I should wait until my next appointment (to gather more info) before attempting to explain to people

Alex

PS. I got my stitches out of my right index finger! I can now type properly! :lol:

PS1. I've also decided to write a symptom list to give to the consultant

PS2. Did a little day-after-boxing-day-shopping today - very tiring :S

PS3 - (good console which I don't have!)

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Cheesy joke about playstations :lol:

Another Update

Thanks Maia and Lola :hehe:

Just another update:

I am now on plaquenil (200mg) twice daily and also to help clear up the chilblians they gave me steriods (prednisolone - hopefully spelt correctly!) to take for 6 weeks.

Today was the first day I had to take all my medication (1 plaqenil (yet to take evening pill), 6 steriods and the usual A->Z multivitamins). I think it was a bit of a shock to my body - felt pretty sick. Had alot of rest and Im feeling a bit better now

So far Ive told some friends and obviously family - everyone is pretty understanding and nice about it :blush:

oh yeah, and Happy New Year to you all! (only 8 days late :lol

Keep your computer safe - Update Update Update!

Another update :blush:

Been finding it hard at school lately - very tired, aching body (especially my chilblians on my feet!) ect

Also I have been finding I have felt sick after taking the steriods in the morning and some chilblains are a little infected :worried:

Went to see the GP, she gave us anti-acid pills to stop the sickness, gave us a couple more boxes of paracetamol for the pain (ibupfrofen and steroids aparently don't mix :sad and also asked for me to have some more blood tests tommorow (I don't like blood tests! Ugghhrr needles....)

Funny how time seems to slow down. I used to take it 'week by week', then 'day by day' and now 'hour by hour', 'lesson by lesson'.

Hope you are all well,

Alex :wink2:

Hi everyone,

Just thought i'd update you.

Chilblains are gone! :rotfl:

However, tiredness is still a major problem. We saw the professor, he gave no definite diagnosis though. He just said, at face value it looks like chilblain lupus, but he said there were some 'worrying symptoms which could indicate a wider problem' (ie systemic lupus). He said that only time would tell. Not exactly what we were hoping for after all these years of uncertainty, but he said even if I had SLE he would give the same treatment (plaq).

I had some more blood tests! They took a lot of blood, but amazingly I was ok - did manage to get a magazine and a hot chocolate out of the ordeal from my mum!

So, the worst of my flareup is over, it is just the tiredness and joint pain which is the only concern. He will see me in November, to see how we can 'prevent' a bad flareup like last winter.

I'm glad I have made it through this hard patch,

Hope you are all keeping well,

Alex


Edit: forgot to add, im only on plaqenil now! No steroids, antacids ect. Just plaq