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A bit loopy
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Discussion Starter · #1 ·
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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Hi Alex

Welcome to the Forum but Im sorry about what brings you here. I was a tad confused when you said you were already diagnosed but as yet hadnt received the results from your skin biopsy. Were you diagnosed through blood work and symptoms? Just curious :)

In any event I am very glad you found us :) This is an excellent site with great information and very friendly members who are only too willing to share their experiences with this disease. Its very tough being diagnosed at such a young age and Im sure you will need all the support you can get.

Have you been started on treatment yet? If you have any questions please feel free to ask and we will be only too willing to help.

Take good care and best wishes during the holiday season

Joan:rose:
 

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Welcome to the forum Alex!
I am sorrry about your diagnosis too. Also amazed at getting any medical services on Christmas Day !
I hope you will find all the information and support on the forum that will help you to get the best possible treatment and live well with lupus.
I don't know how much you know about lupus but most diagnosed people are very fearful about the future as they hear the worst stories. Our members here are not truly representative of the lupus population as all those who are living pretty well normal lives with their symptoms well controlled do not usually post on forums because they have no problems.

I hope your parents are supportive and understanding. They might be interested in the forum too.
Just ask if you need any help of any sort. We will do our best to help you through the difficult times.

Bye for now :)
Clare
 

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A bit loopy
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Discussion Starter · #4 ·
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 :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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Thanks for clearning that up Alex :) The very best of luck with your biopsy results. Keep in touch and let us know how you got on.

Oh, best of luck for Christmas day as well! ;) Ouch! I hope you get a nice present to compensate ;)

Take care
Joan:rose:
 

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A bit loopy
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Discussion Starter · #6 ·
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! ;))

Alex
 

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Hi Alex,

Sorry your so young and have to deal with Lupus. I hope they sort you out and get you on meds to feel better.

I just wanted to shout your way and say welcome to a great place. I do hope to get to know you better.

Merry Christmas to you and your mum.:wink2:
 

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Old Timer
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Welcome Alex 8)

I have skin problems as well which were horrible by the time I was diagnosed. It seemed like only days after starting plaquenil that everything began healing for me. Except for flares, it's under control now. As for the tiredness, most of us are stuck with that one. I hope you get everything ironed out soon and get the proper treatment you need, it will help a bunch! Take care and keep us posted. :)
 

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Dear Alex, Hi, I have Lupus, so does my Daughter who is 17. Tiredness can be a huge problem. Plaquenil should help you but it is not quick,so don't be disappointed if it doesn't seem to help for a while.

Get whatever help you can at school. Some areas they will even pay a fellow pupil to carry your bags etc. around the school. Preserve your energy for the things you like doing. Sometimes a more comfortable chair at school can help, although often there is so much moving from classroom to classroom that it can make seating difficult. Do not forget you will be entitled to extra time for exam writing, a scribe if necessary and a rest period during exam if helpful. In most places the Educational Psychologist organises this, but do check because my children ended up home educated so I am a little out of date.

If your Mum did her medical training sometime ago, she may well be surprised at how treatments have improved. I am sure having her along to Consultations will be a big help. Have you started explaining to friends yet? That can be a hard thing, especially if you are not too sure of your own reactions yet.

Let us know anything we can do to help.
x Lola
 

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A bit loopy
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Discussion Starter · #10 ·
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 :eek:). 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!)

^
|
Cheesy joke about playstations :lol:
 

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The Other Illinois Tammy
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Welcome Alex,
You are right the site is full of info and their are great people here also. I am sorry to here you have lupus but on the other hand you are not alone as you can see. I hope that you find comfort here and some good friends. There is a chat room and please feel free to join in anytime you want to talk.
Tammy
 

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Hi Alex, I just wanted to say Hi. I have a 13 year old daughter who was just daignosed. She too is feeling very tired lately on top of the fact that she has a lot of swelling in her feet and hands. One thing that I can suggest is that since your doctors appointment is not until March, make sure you write down all your questions/concerns you may have.

It seems like once the doctor is in front of you and trying to explain the ins and outs you always draw a blank. :hehe: Anyway, as for the being tired, my daughter will be starting prednisone in 2 weeks if the other meds to help her enough.

Good luck to you and Happy Holidays.
 

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A bit loopy
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Discussion Starter · #13 ·
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:
 

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Hello Filmguy, I don't know what that means exactly but at least you have a confirmed diagnosis now. I hope you get all the explanation from the Consultant.
x Lola
 

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I've had chilblain's too - not a pleasant experience. I'm glad you got an official diagnosis, supported by biopsy, and can hopefully start on some treatment for it that will help greatly. This is a pretty good article on it, especially it's relationship with lupus.

http://emedicine.medscape.com/article/1087946-overview

Seems about 15% will develop SLE, and about 50% will also have discoid lesions. I think it is also strongly related to anti-phospholipid antibodies, so it will be important to be tested for those as well (if you haven't been tested already).

Take care and thanks for the update. I hope you get some help soon. Stay warm - especially those extremeties! :)
 

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A bit loopy
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Discussion Starter · #16 ·
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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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
 

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Hi Filmguy, I'm not familiar with chilblians, but it doesn't sound pleasant at all. It's good you have a confirmed diagnosis and are starting treatments. Let's hope it helps lots! I felt sick when I first started Plaquenil, too, but it does subside as your body gets used to it. :)

Hope your upcoming appointment goes well. Making a list is a good idea so you don't forget things you need to tell or want to ask.
 

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A bit loopy
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Discussion Starter · #20 ·
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:
 
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