Hello. My sister has lupus and I'm scared right now. Just talking...

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New Member

Date Joined Jan 2009
Total Posts : 1
   Posted 1/9/2009 12:37 AM (GMT -6)   
My sister is 44. In 2005 she lost her husband/soulmate unexpectedly. In November of 2007, she was diagnosed with lupus.
At first it was just fatigue and stiff joints.
Today she is in the hospital with vasculitis, fighting to keep her fingers. She had a nitroglycerin shot, which is improving the circulation in most of her fingers, except for one. She is starting a "pulsating" prednisone and is also getting a nitroglycerin ointment to put directly on her hands. She will also have to do a treatment with a hyperbaric oxygen chamber to try and help the finger that is already necrotic.
She is now starting a high dose drug to try and kick this into remission. She is already on a chemo pill, so I'm not exactly sure what this other drug is.
She has had to move in with my parents this past December because she just can't function on her own anymore without help. She can't work. She misses her husband. We all do.
On the bright side, she has the best attitude ever, and so far this horrible disease has not affected her organs. I'm knocking wood as I type this.
Just had to talk to people about this. Not many people understand this disease.
I think good thoughts for all of you.

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 1/9/2009 4:04 AM (GMT -6)   
We're thinking of you too, baby sis, and your sister and your whole family. Lupus is hard to understand even when you're dealing with it personally, so it's that much harder for others to get it. It does help somehow just to talk to people who know what it's like. I have not had any vasculitis, so I haven't dealt with that personally, but it sounds like the doctors are trying hard to save her fingers. I will keep her in my prayers. She sure has been through a lot in the last few years!
~ Bee

God is the strength of my heart! - Psalm 73:26

Regular Member

Date Joined Oct 2007
Total Posts : 184
   Posted 1/9/2009 5:05 AM (GMT -6)   
Goodness... I'm so sorry to hear about your sister... I'll be honest.. I didn't know about this vasculitis.....

I sure hope all will be ok with her.... I'm glad your parents are able to help her... and you too....

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2009 11:40 AM (GMT -6)   
Hello Babysister,
My prayers and good thoughts are with you all.  I think Bee said something very profound.  Lupus is hard to understand even when you're dealing with it personally. That is so true.
I also have vasculitis, but not to the extent your sister has it. Mine has responded very well to prednisone and I don't really have any issues with it as long as I'm watching for any symptoms. I hope the pulse steroid treatements and this other drug work wonders for her.
The fact that she has such a positive attitude will increase her odds of beating this and getting well!  That is good news to hear.
Please visit us often and if she wants to join and ask questions, get support and encouragement, you're all welcome here.  It sounds like she has tremendous support from you and your parents and that alone is huge!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 330
   Posted 1/9/2009 12:06 PM (GMT -6)   

My heart goes out to you, your sister and your family. As has already been said lupus is a very strange and difficult disease, only God knows why we go through some of the things we do. But I am a true believe that it makes us stronger in the long run! Your sister sounds like an amazing person to have gone through so much heart ache and physical pain and still be able to keep a positive attitude! Please know that we are all praying for her. Please keep us posted on her progress.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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