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Posted 9/18/2009 6:14 PM (GMT -5)
I saw my rheumy this morning and we talked about my platelets (which are in normal ranges now, but have fallen in the last week).  She tested my antiphospholipid antibodies to see if they're positive and they are - high positive.  It's very clear that my Lupus is very active right now.  I've been on 50mg, 40mg, and now 20mg of prednisone for 3 weeks now and I should be blowing up like a balloon, but I'm not.  I'm losing weight.  7 lbs in the last 2 weeks.  When I told my rheumy that her eyes got big and she said that isn't normal and that weight loss like that is a clear indicator of highly active disease.  She wants me to monitor my weight closely.  She increased my Imuran too.  I'm a wreck.  The weird thing is that I don't feel dreadful.  I'm not 100% but I can function. 

 

Anyone else experience weight loss like this?

Posted 9/18/2009 6:26 PM (GMT -5)
I lost approx 20 lbs in a couple of months right before I was dx but I was still having A LOT of GI issues and like you my lupus was very active. I didn't feel dreadful either, I was still able to hold down a job but I didn't feel that great either, ya know? My rheumy started me off on Imuran and bam... I put back those 20lbs which I really needed to as I was down to about 116 lbs and I'm 5' 6" haven't weighed that since I was a teenager! I pray the increase in Imuran along with the Pred and Plaquenil will bring your lupus back under control.

Please keep us posted on how you are doing (((hugs)))
Posted 9/18/2009 6:31 PM (GMT -5)
Thanks Stacie!  Yes, me too.  At the time of my diagnosis I was 105lbs and I'm 5'6".  I looked anorexic.  I could out-eat a trucker but nothing stuck to me.  This is all reminding me very much how I felt in 1999/2000.  Not good.  I'm still at a very healthy 142lbs, but that could disappear quickly if I keep losing 3 or more pounds every week.  Eeeek.

 

I will definitely keep you posted!

 

 

Posted 9/18/2009 9:31 PM (GMT -5)
I hope the medication changes help. I wish I could say more.
Posted 9/18/2009 10:11 PM (GMT -5)
Ginny, I had some weight loss right around the time of getting sick, but have only had weight gain since prednisone. I pray the med changes get things under control. I know how sick you were in the past and I really hope the docs get things under control for you. Are you having frequent appointments to be monitored?
Posted 9/18/2009 10:29 PM (GMT -5)

I lost about 9 lbs in 2 weeks just before being put on Plaquenil in Dec.   I was really feeling awful.  Also had a mild UTI, so got put on antibiotic for that, and started feeling better almost immediately.  I hope you get some answers.....during that period my bloodwork was basically normal except for the ANA.  Good luck, Ginny.

Lucy

Posted 9/19/2009 8:02 AM (GMT -5)
Wow Ginny! Weight loss on Prednisone and even higher doses of pred. I am so glad your rhuemy is keeping a close watch on things with you. I can honestly say I have not had any weight loss since my diagnosis...only weight gain! Please keep us posted on how you are doing! You are deffinatly in my prayers and I hope you have a nice weekend!!!!
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