View Full Version : new member

01-27-2009, 09:25 PM
HEllo my name is Deb. I am 36 years old and was diagonised in June 2008 with lupus. I had some unexplained bruising and red and white spots. My local doctor did a blood test and the next day I was in Methodist Hospital in Rochester. My platelets were at 4,000 (normal range would start at 150,000) I was hospitalized twice as in patient and once as an out patient to try to get me platelets back to normal. And dozens of trips back to Mayo Clinic. I was started on a 110 mg of predinose and eventually tappered back to 20 mg by October, today I am at 7.5 mg. I am also taking 400 mg of plaquenil, 1500 mg of cellcept, 1000 mg of tetracycline, 10 mg of Ambien and calcium, Vitron C and multi-vitamins. When my platelets went back to normal I thought everything would be fine ~ OH MAN WAS I WRONG. I have been dealing with extreme faitgue, headaches and joint pain. I really feel all alone. So I am hoping this web posting will help me talk to people that understand. Thank you very much for taking the time to read this, I really apprecaite it.


01-27-2009, 09:52 PM
I promise that you are not alone and that there are countless amount of people on this forum, including myself, that would love to talk to you about the countless doctors visits and 'fun' new developments lupus brings. I know everything right now seems terrible but the most difficult part is over, the diagnosis. We're all here for you whenever you need us =) i hope i helped at least a little.

Mary Jane
01-27-2009, 11:50 PM
WELCOME :wink: You will find you are definitely not alone. I've learned so much from this forum. I was diagnosed about two years ago. It took about a year to diagnose me. I was just some big mystery for awhile. I feel like I'm my doctors pet project some times.

Angel Oliver
01-28-2009, 05:27 AM
Hello and welcome and believe me you are not alone as every one here have said. So glad you found us.Soon i hope we all can make you feel a little more confident.We all understand. So keep posting and you will find many people here can identify with your symptoms.

Love n hugs

01-28-2009, 09:36 AM
Welcome Deb,

You are amongst friends now. I am still going through the diagnostic roller coaster.....WOOOOO!!! :) So although I may not have any answers I do have LOOONG Bunny ears :D good for listening.

01-28-2009, 12:30 PM
Hello and Welcome, Deb :lol:
You are, most definitely, not alone when you are here with us. We are all too familiar with the debilitating fatigue, migraine-like headaches, and the excruciating joint pains.
You will find that there is always someone here who understand, who is willing to help, and who will make sure that you never feel alone.

Welcome To Our Family
Peace and Blessings

01-28-2009, 02:53 PM
Hello Tootles,

Adding my welcome to the bunch. :D

Sorry you're suffering. I'm sending gentle HUGS your way, and hoping today is a better day for you.

You don't need to feel so all alone any longer, we're just a keystroke away.........and we ALL know the loneliness.

There is plenty of empathy and understanding to go around.

Glad you joined....


Lori :P

01-28-2009, 03:29 PM
Hello, Once you have the chance to cruise this board, you will find that you are in no way alone. Lupus and MCTD affects everyone in different ways and there is a vast array of knowledge here to help.

Welcome and I know that you can find some answers.

01-28-2009, 09:12 PM
Thank you very much for the warm welcome. Finally the 1st time in 7 months I do not feel like I am losing it. Before I felt so alone, now I have people that truly understand and care.
Thank you, Thank you, Thank you!!

Take Care, Deb

01-28-2009, 09:18 PM
Hi Deb,

I'm Rob. I'm 41 and was diagnosed with SLE five years ago. You are not losing it, and it looks like you now know that you are not alone either. There are a bunch of us out here who are just like you, and believe me, we understand. Welcome to our group!


01-30-2009, 06:56 PM
i feel for you. i cant believe how my life has chaned. i have hope i almost died about a year ago from liver failure. take care i will pray for you

emuran,predisone,praqinill, tramedol, oxycodone,effexor klonopine

01-30-2009, 07:04 PM
Hi Deb! Sorry for what you've been through. Just wanted to say i wish you well. :B-fly:

01-30-2009, 07:35 PM
hey altho I have only just arrived at this forum myself wanted to say welcome...

01-30-2009, 08:59 PM
Hello Everyone!

Thanks again for the warm welcome. It is so nice to know when I need support, I can just jump on the computer. It really put a smile on my face when I saw the replies.

I do have a question. Over the past few days, I have had an itchy neck. But I just thought it was because I live in the frozen tundra (Minnesota) and I was dry and not putting enough lotion on. This morning and it looks like a sunburn (something I thought I would never say again in my life). It is hot to the touch and itchy. Any thoughts......

Hope everyone is doing well.

Thanks again!

Love, Deb

01-30-2009, 10:36 PM
Tootles...welcoming you with a big hug.

Itch..I know the word well...neck, head to toe. I've had it...

Could be a myriad of things.

New lotion? New shampoo? New laundry soap? Shirt rubbing? Contact dermatitis? Cuddling any animals? Sweat irritation? Necklace?

Stress, nerves? Night sweats?

New drugs?

Rash? Raised? Blisters?

Try cold compresses to ease the itch and see if that helps.
Try using a mild soap like Cetaphil to cleanse. Pat dry.
Try OTC anti-histamine at night. Zyrtec, Claritin...
Keep your bedroom cool.
Keep hair off you neck.
Keep nails clipped.
Refrain from itching.

Hope this helps...hugs.

01-31-2009, 05:17 AM
Hey sorry to hear bout ur rash...
I have had that a while back when I had my clothes washed by her mother... she used a different washing powder and my whole back was red and ichy for days.....

I took a lot of cold-ish showers and just tried to keep off it and it went away..... just got small patches now sometimes but gotten used to it.... :P
so just ignoring them......

good luck with it...

oh and no scratching.....

02-01-2009, 08:35 PM

Thank you for the information and suggestions on the rash. I just kept on putting ice packs or cold wash clothes on it and by this evening it is almost gone.

Yesterday, I was having a good day and my 7 year old son calls the basement his "Workout Gym" and he is the manager. He started this a few months ago and said maybe doing these exercises will help the lupus go away. I went down last night and we did exercises which was so much fun, but today I can hardly move my upper body. But it was sure fun to be with my son and then he feels like he is helping so much.

I am so grateful for this site! I hope everyone is having a good as well. Thanks again for everything.

Stay Positive ~ Love,