I have a problem......

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/18/2009 4:14 PM (GMT -7)   
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?
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
35 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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/18/2009 4:26 PM (GMT -7)   
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)))
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/18/2009 4:31 PM (GMT -7)   
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!
 
 
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
35 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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/18/2009 7:31 PM (GMT -7)   
I hope the medication changes help. I wish I could say more.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/18/2009 8:11 PM (GMT -7)   
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?
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/18/2009 8:29 PM (GMT -7)   

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


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/19/2009 6:02 AM (GMT -7)   
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!!!!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 

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