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Conditions and Diseases > Lupus Forum > New W/tons of Questions...
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Q: New W/tons of Questions...
asked by: vfranklin on December 5th, 2003
New User
First, I would like to say hi! To everyone. :d I found this site 3 days ago and have been browsing since. There are so many things that I have read that are useful. I wish that i'd found you all years ago. It seems that somehow reading your experiences don't make me feel so alone. Wink

i'm 21 I was diagnosed with lupus when I was 18....Couldn't walk or feed myself or even function at the time. I was put on plaquenil after a year I went into remission.....Did great and then decided go ahead and have myself a baby....Big no no. She was 2 months early and I was in a coma...They said that combined with my heart failure that there was no way that I would make it through it alive. But *suprise* here I am. Since the birth of my daughter my poor ol' doc hasn't been able to control this monster....I've been in and outta the hospital about once every other month occasionally forgetting to skip a month.

They changed my meds.....I'm taking methatrexate now as well as vioxx and plaquenil which seem to be making a big difference. I was reading about how the methatrexate has effected some of you with horrible nausea.....Am I to expect that in the future? It makes me a little naucous now but does it get worse??? I've been taking prevacid for my stomach since the birth of my daughter....Would that curtail some of those symptoms??? Also since starting meth. My hair has started to fall out....I can't run my fingers through it without taking the hair with me.....Is that normal?

I've also just moved to phoenix and was wondering if anyone was familiar with a good rheumy here.

You guys have no idea what finding this site has done for me....For once I feel like I can talk to someone about what's going on and they can relate.

*muah* vanessa
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daisy3
replied on December 5th, 2003
New User
Hi vanessa,
you called it right...A monster Evil or Very Mad . I just wanted to say welcome. I'm new here too, and you're not alone. I think finding a good rhuemy is the trick. Hope you can back on track. Taking care of a baby must be exhausting. Take lots of naps! I couldn't imagine that at this point in my life, although my monster has a friend called menopause........ Crying or Very sad ! Take care and let me know how you are doing! Daisy Wink
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daisy3
replied on December 5th, 2003
New User
Hi vanessa,
you called it right...A monster Evil or Very Mad . I just wanted to say welcome. I'm new here too, and you're not alone. I think finding a good rhuemy is the trick. Hope you can back on track. Taking care of a baby must be exhausting. Take lots of naps! I couldn't imagine that at this point in my life, although my monster has a friend called menopause........ Crying or Very sad ! Take care and let me know how you are doing! Daisy Wink
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LadyBrannon
replied on December 5th, 2003
Active User, very eHealthy
Welcome to the group!

I know all kinds of results with methotrexate. When I was giving myself weekly injections, I had one or two bad days and the rest were okay. I had friends who never felt *any* nausea at all. Then I had other friends who never got over the nausea...Let us know how it goes for you!

Good luck with the rheumy, as daisy 3 said, that is *sometimes* one of the most important aspects of controlling the lupus.

Hugs!
Ladybrannon :d
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vfranklin
replied on December 6th, 2003
New User
Thanks so much....Yes daisy, taking care of the baby is exhausting....I nap when she naps. It's the only way that I can possibly keep up. Smile she is a challenge....But sometimes when I would have no reason or drive to get out of bed her cute little smile makes living through this worth while.....

Thanks for everything Smile
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jonesm51280
replied on December 22nd, 2003
New User
Hi Vanessa
Hi my name is melissa, I was also dignosed at 18, had seizures, kidney faliure, cemo and lost my hair and was told I was not going to make it, and another suprize i'm here too!! I had a miscarriage three monthes ago and did not even know I was pregnant because of normal cycles. I want a baby but that is exactly what I am afraid of is coming out of remission. I wish you well and would like too here how you are doing if you would like to e-mail me..Keep Laughing Laughing and always keep peace and love in your heart and you'll be ok!!Melissa
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mia
replied on January 25th, 2004
Experienced User
Hi vanessa,

not only am I a hair lose survivor i'm also a hairdresser. Anytime the body is in distress it takes nutrients away from the hair and skin which the body sees as superfluous to survival. Thats why we look sick. Aside from that, in my own experience and professionally, I can tell you that cox2 inhibitors like vioxx are common culprets of hair loss. There is no other product currently available that not only helps with the pain and inflammation, but also prevents future damage from occuring. It's hard deceiding whether you want hair or pain. Also thyroid problems cause hair loss which others members here have said they also have, as do i. When my thyroid is off, hair flies from my scalp. Thyroid tests are very simple.

Congradulations on your baby, but did you know it is extremely common to have sudden, extreme hair loss exactly 3 months after the birth of a baby. The good news is, this always comes back!

Good luck figuring out what the cause is.

Mia
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