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TobyJug
01-30-2009, 06:36 PM
Hello all...

I have been searching on the net for a long time and this seems to be one of the only proper lupus forums in existence... So I thought I better register...

I am Toby, 27 years old from Holland but currently living in the uk with my lovely and very understanding Girlfriend and a baby on the way...
and not to forget our crazy dog....

I have been diagnosed with Lupus just over a year ago...
I have had problems and symptoms for years tho.... As they where getting more and more severe I finally got an answer...

Not that much can be done like... :twisted: I also have Ulcerative colitis but that is a different story altho I believe that it's related...

anyway just thought I better say hi....

sits_inthe_corner
01-30-2009, 06:42 PM
Welcome to the board TobyJug

Have they started you on medications?

Glad you have a supportive partner, that's always a blessing and a crazy dog is helpful too.

I've got a wonderful old fella, and the dog's pretty good too. :lol:

This is a great site, lots of information and warm support.

lucky7
01-30-2009, 06:44 PM
Hi tobyjug! looks like we decided to register around the same time! I feel better for it,and i think your right about it being the most legitimate one. i didnt feel right registering with any other ones.


Im glad to hear you have an understanding girlfriend,that makes a BIG difference!

Congrats on the baby-on-the-way!

lucky7
01-30-2009, 06:47 PM
LOL I have the crazy dog thing covered by 2! Gotta love em! They calm me sometimes when i feel bad. They're our babies!

Oluwa
01-30-2009, 06:56 PM
Well, Hey there TobyJug..

Welcome...We're happy you decide to join, a great move as you will meet lots of great people, men and women....

A baby! Anticipation....what excitement in your house......prayers for a healthy baby and Mommy.

Ulcerative Colitis is an autoimmune process. They say between 1-4% of those with Lupus develop UC. Are they treating you with sulfa antibiotics? If so, some of us can not tolerate sulfa derivatives. They can be a flare trigger...exacerbate our symptoms.

Look about, chat up...

See you about...
Be well,
OLuwa

TobyJug
01-30-2009, 07:02 PM
thanks for the quick welcomes....

yeh lucky we must have decided to register the same time lol

sits_inthe_corner:
Thanks glad to be on board I think...
Yeh I am on medication but minimal at the moment...

I stopped the medication for the colitis a few years ago because I felt they did more harm than good..

For the Lupus I was on Amitriptyline and Naprosan (naproxen) I have stopped the Amitriptyline a while ago as it made me even more energy less as what I already am and I cud not do with that...
I am taking 1000mg of the Naprosan a day to try and ease the pains but it don't really seems to be working.... :?

I am going back to the doctors actually and see what is what but It occurs to me that they are a little clueless here in the uk regarding Lupus and they don't really know what to do with me and my constant pains and problems....

TobyJug
01-30-2009, 07:10 PM
Ulcerative Colitis is an autoimmune process. They say between 1-4% of those with Lupus develop UC. Are they treating you with sulfa antibiotics? If so, some of us can not tolerate sulfa derivatives. They can be a flare trigger...exacerbate our symptoms.


I think I had the UC way before the Lupus and not been on medication for years for it...
But come to think of it I did have Lupus like symptoms before I knew even about the UC.... My Granddad (mom's side) died of the UC medication basicly after it destroying his body for years and it's in the family so is arthritis and my mum has fibromyalgia so the whole Autoimmune thing is not rare in the family....

:(

Good point about this medication tho I will look into that I was on stuff like that and much more for the UC for a few years

thanks

Rastagirl
01-30-2009, 08:12 PM
Hello TobyJug

Just wanted to add my welcome to the bunch. :)

You're right, this is the site to join.....I was most disappointed by what else was available.

Congrats on the little one on the way. You and your girlfriend are gonna have such joy. Babies are blessings.......

I'm glad you found us and look forward to getting to read your contributions.

Take care...........

Fondly,

Lori :P

p.s. I noticed your avatar....do you offroad? My husband races cars, so I'm a car gal.

sits_inthe_corner
01-31-2009, 03:32 AM
Finding the right medications can take awhile, and as you already know most of them come with some really :roll: fun side effects.

I'm on plaquenil and arthrotec75. The plaquenil made me dizzy and sick to my stomack and I couldn't be far from a bathroom.

I went back to my doctor and asked if there was a better way I could take it and she gave me alot of assistance. Now I'm doing great on it thanks to her advice.

Just goes to show it never hurts to ask, but why they don't tell you these things before you start...geesh.

At first I was told to take two pills a day, one in the morning and one at night. But when I went back to the doctor she told me I could take both pills together right before bed with a small tub of yogart and sleep through most of the unpleasantness.

It worked. But why not tell patients to do that in the firt place....make ya suffer for no reason.

I'm not shy about grilling my doctor's now when they give me instructions. I just tell them, they can either explain it thoroughly now or I can come back with questions 3 or 4 times. Most of them laugh and relax and tell me what I need to know.

Cept my idiot rheumy who's as flat as a pancake...must be horrible going through life with no personality. :P

TobyJug
01-31-2009, 04:46 AM
Yeh Sits in the corner I see what u mean....
But hey like I always say THE SHOW MUST GO ON.....

Hey Lori....
Thanks for your welcome....
and yes I do offroad....
I love it.....

The truck in the avatar sits out front the house being broke tho at the moment.... :? So driving a tiny Honda at the moment..
but going to look at a Land Cruiser 2mo (4.2 TD)

What does ur hubby race?

Rastagirl
01-31-2009, 01:33 PM
Hi TobyJug

My husband races in SCCA, Sports Car Club of American. He races in the 'Spec Miata' class.

The guys (and some ladies) buy the little Mazda Miata sports cars, and gut em, put in a rollbar and safety equipment, and have a blast racing on the weekends throughout Spring and Summer.

Those little cars get up to 120 on the straight away......It is unbelievably competitive. My husband's been doing it for about 6 years now. And the people are really fun at the track. They all help each other when one breaks down. It's a fun, family-oriented hobby that keeps my husband sane when he isn't stressing over the computer problems of the world. :lol:

You should check out his website and watch some cool, in-car racing videos people send him from all over the world.

www.specmiatavideos.com

Take care...........Vrooom Vrooom!

Lori :P

iseedeadmonkeys
01-31-2009, 01:37 PM
Hello again Toby :)

did you add me on msn?

ISDM
x

TobyJug
01-31-2009, 01:58 PM
Hey Lori,

nice yeh I have heard about that.... sounds like fun....

Yeh I did iseedeadmonkeys.... :D