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amethyst
10-12-2002, 06:02 AM
hi everyone,
I've just been recommended to this site by a concerned friend. It has been most comforting to know that im not alone. Ive just been disganosed as having SLE after 6 months of joint pains and flaring. thank god my latest dr finally confirmed what the others wouldnt. so i'm now on some oral steroids but it's quite a large dosage as ive just started on it and i'm worried about the side effects. it seems that it'll make us more masculine? and i dunno if its the disease or the medication but my hair's falling out as well... sigh! worse thing is the meds are making my bones weak so i can't walk so much. even my fingers are a bit stiff today so typing this is taking an awful lot right now. the calcium and the vit B is helping a bit but emotionally am still very shocked that after all these years of being such a healthy young person i'm now stuck at home a lot and not being able to do all the things that i want to do. my family's been very supportive. everyone's always making sure i dont stress and that i take things easy but i still feel like it's so unfair that we have to go through this for the rest of our lives. i guess i'm still dealing and accepting with the fact that ive got this disease.. but i keep telling myself that life goes on.
anyways, just kinda needed to tell somebody all this stuff because i still feel like nobody around me really know how hard it's been. thanks for listening ?http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

Sienna
10-12-2002, 07:21 AM
Hi Amethyst,

sorry to hear you've had so much trouble with your health... hopefully things will find a new equilibrium for you soon...

..............but I'm glad you found your way here ?http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/rolleyes.gif
The people on these boards are great value - and, as you mention, it can be so important just to 'discuss' things with people who know what you're talking about.

I'm not diagnosed myself, just dealing with some 'interesting' symptoms (so I can't answer your meds queries) - I just wanted to say 'hi'

mizpriz
10-12-2002, 07:28 AM
Hi Amethyst,

I'm fairly new to this site also but have been living with lupus for 17 years. I've learned so much from other people since coming here that my symptoms are so much like others. It has been a comfort. I too have had hair loss but also take prednisone. The doc thinks it more from the disease itself than the med, but it could be a contributing factor. With the weakness and stiffness, sometimes it takes a little bit for the meds to build up in your system to be effective. If you don't notice any changes, talk to your doc about adjustments.

good luck,
mizpriz http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/inlove.gif

Christine UK
10-12-2002, 08:41 AM
hello and welcome to our site i tcan be a shock to the system when u are first dx.you will find much support here,i am from the UK where r u ??
hugs http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/flower2.gif

Caro
10-12-2002, 08:55 AM
Hi Amethyst

http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/thumbs-up.gif Welcome ! http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/thumbs-up.gif

I'm so glad your friend told you about this site.
You will find loads of support and advice here. I'm sure you will make some very good friends, too.

You are probably feeling pretty stunned at the moment - being diagnosed with a chronic illness is a shock.
No matter how rotten the symptoms make you feel it doesn't make you deeply happy to find out what the problem is. Many of us feel elated to finally get a diagnosis at first - but the reality kicks in and you realise you are stuck with something you certainly didn't want. Full acceptance takes a while.

Regarding your prednisone - masculinising effects are not especially common. You won't be turning into a bloke any time soon. The most common of these effects is that you may grow a little bit of down on your upper lip , which can easily be fixed with waxing. I've been taking steroids for many years and have not turned furry !

If you want to find more info about your medications, try this link. I have found it very helpful and you might like to add it to your favourites -
Drug Digest (http://www.drugdigest.org)

Love

Caro http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/hehe.gif

Sannie
10-12-2002, 09:56 AM
Hi Amethyst

Welcome to the site where I am sure you will find lots of support and information.

You may like to look at the following sites where you will find a wealth of information - including the first 100 questions asked by newly diagnosed patients:

www.lupus.org.uk
www.lupusuk.com

We also have a friendly chat room here so please pop in when you can.

Take care.

Love
Sannie