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Newbie here

943 Views 28 Replies 11 Participants Last post by  filmguy
Hi everyone!

Just a quick intro. Im Alex and im a male teenager living in UK, who has just been diagnosed with lupus. In fact, I havent even got my results back from my skin biopsy (getting stitches out on Xmas day - lucky me :p)

I just want to say this site has some great info, greatly appreciated :)

Alex aka filmguy
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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 :rolleyes:

PS. Hi Clare.T - haha, well turns out my mum does have some medical training, so she's gonna do it :eek:
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Hmm, I know its a hard time for my mum right now. I know that she's worried, and im also sure that she's heard 'bad stories' about lupus in her medical training :sad:

The worst part I find about my condition is tiredness :worried: I have really noticed I can't do as much as other people. Even just helping with moving chairs is becoming a bit of a struggle. The chilblains are just an added extra - They limit my sports options at school. I can't really do sports that involve lots of running around, or swimming (they get infected). I've spent most of my time in the gym, but even then - I get tired easily! :mad:

Ah well. life goes on :blush: (and it's nearly Xmas! ;))


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 :eek:). Right now I feel I should wait until my next appointment (to gather more info) before attempting to explain to people ;)


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!)

Cheesy joke about playstations :lol:
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Thanks for all your advice! :)

Just a update - the results for the skin biopsy have come back. Apparently I have chilblain lupus. I think it's a branch off discoid lupus, but im struggling to find much info on it. Hopefully when I see the consultant on Wednesday I can get more info :blush:
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:)
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Cool as a Cucumber

LolaLola;530550 said:
Happy New Year to you too. Tell me are you called Filmguy because of your work, you love films or don't tell me you have Film Star Good Looks!!!!
x Lola
haha, nah nothing too glamourous :rolleyes: - just a great fan of films in general. :wink2: There's nothing like sitting down on a Friday night with friends watching a cheesy action film :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 :eek: (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:
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Hi everyone, thanks for all your advice :blush:

The blood tests went ok, felt a bit fainter than previously because of my already weakened state, but a couple of sips of coca cola soon got me back up - Thanks Lola! :lol:

My chilblians have been healing up, but some are getting slightly infected. We got some antibiotic cream (Polyfax ointment) and that seems to help.
I have been off from school all week to give time for my feet to heal. All the teachers are pretty helpful. Most of them send work via email.

As for the antacids not mixing well with the Plaquenil and Prednisone, I will be sure to take the pill about an hour after I take the other meds and I'll tell my mum. (I think she does know about it - she scans the infomation sheets like a hawk! :lol:)
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! :eek: 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! :p

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 ;)
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Thanks! :hug:
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