Is weight loss a very common side effect of Lupus?

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slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 3/22/2011 6:36 PM (GMT -7)   
I started out at 122lbs and am now down to 97lbs. My rhuemy just says "eat more".  I truely do eat but just seem to lose. I really don't have an appetite but do force myself to eat 3 meals a day. I take 15mg of Medrol a day and would think that would put on the weight.
 
Could taking Calcium vitamins cause weight loss? I take 1500mg a day due to the start of Osteoporosis and being Lactose Intolerent.
 
Just very concerned and confused. Any advise would be appreciated!!
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 3/23/2011 5:55 AM (GMT -7)   
Hi slm, Have you had your thyroid checked to see if it's hyper? Are you having any GI symptoms like diarrhea, nausea, vomiting that could be contributing to the weight loss? I would definintely see an endocrinologist if you are doing everything right (eating enough calories) but still losing weight because it could be a thyroid or other hormonal issue. If its somthing causing you GI distress, you may want to see a gastroenterologist.

Usually when someone with lupus loses weight it is because they don't have the appetite or they are sick from the meds or because of the medications just causing issues with gaining weight but I don't see any that would have that affect. I don't know your height but I'm 5'2 and 97lbs is too low for ME even (I'm 115). I would definitely try and get answers, not just 'eat more'.

Take Care
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 3/23/2011 6:52 AM (GMT -7)   

Hi slm,

Looking at your medical hx and meds again, I noticed your are epileptic.  I have a friend who is also and always had issues with not being able to gain weight when on his seizure meds.  I'm not sure about yours or even his because I'm not sure which one he takes but maybe a possibility its your seizure med that could be a possibility as well?  Just a thought.

Take Care


DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 3/23/2011 8:21 AM (GMT -7)   
Thanks for the advice. I'm 5' 3 1/2" (had to throw in that half inch!!). I did have my thyroid checked and although it was off a year ago it was fine this time. I also went to my neurologist last week and he said it wouldn't be from my Keppra. I do have an appointment with a GI in a couple of weeks to check things out in that area.

I suppose I'm doing all I can do. As long as it all checks out okay I'll just consider this just another hurdle in life.

Thanks again!!
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 3/24/2011 3:28 PM (GMT -7)   
I have been losing weight as well, went from 165 to 135 in a year so nothing too dramatic, but I definitely wasn't trying to lose weight and I can't tolerate exercise anymore, either. One doctor I saw suggested drinking an Ensure or something similar every day. Haven't done that yet since I've been on high(er)-dose prednisone for a month now and that has caused my appetite to do a complete turn around - I am craving sugar, starch, and fat - horrible!

Kathryn

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 3/24/2011 5:02 PM (GMT -7)   
Thanks Kathryn, it's good to know there are others with the same issue.

I know it's a complaint that most would love to have, and probably one in the future I wish I had again, but for now it is concerning me. I do crave mostly food that is anything but healthy!! I'm sure do to the steroids. Or I'm just not a healthy eater..(probably the later of the two)

I do have the same issue with exercise. I have good intentions but my body is on a different playing field. Anything above and beyond the norm brings on a tremendous flare-up. One which I am never really out of but it does occasionaly calm a bit.

For now I will do what I can to put the weight back on and battle what's around the corner.. Lord knows there is always something next with this FABULOUS illness!!

Thanks and take care!!
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 3/25/2011 7:56 AM (GMT -7)   
The Ensure is a good idea (no matter what else you are eating) as it is the correct ratios of protein, fat, and carbs in the right kinds to be absorbed and used most efficiently for the body.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/29/2011 10:37 AM (GMT -7)   
I am dealing wth the opposite over the years i have put on the lbs. I think it would only be right if we could all get together to even everything out. : ) Steriods and other meds and actually not wanting to eat my metabolism just kinda was keep everything. i am on my way down but i am having to eat every two hours small snacks Healthy ones to get my metabolism to wake up.

I feel for you it is scary being on the spectrum of losing and can't gain. I also find this fabulous illness to bring challenges to my door that i could have never have dreamed up on my own. Best of luck and health to you.

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 4/1/2011 3:34 PM (GMT -7)   
It is all so overwhelming sometimes. From the steroid shots to the confusion. 
 
A young girl came into my work with a shirt on that said "No, I don't look sick, but you don't look stupid either"... I loved it. Ironically she had Lupus as well. All I could think of is, she's so young...
 
I suppose with any illness, God is not prejudice.. And things can always get worse. My daughter and I just got back from Disney.. It rained the whole time. I believe it was to my advantage. No SUN, limited PAIN..
 
Everything works out!!
 
Have a great weekend to all!

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 2/23/2012 8:12 PM (GMT -7)   
Okay I saw this and just HAD to post. This is the first I've heard of weight LOSS rather than gain and it actually sounds similar to me!! I am 5'2 and weigh 96lbs. Over my life and especially the last few years haven't weighed much but now it's just unhealthy. I was 115 after high school in 05 and Lupus started acting up after I had my son in 07 but I didn't find out it was Lupus until 08. I had my daughter n 2010 and have lost even more weight since her(leading to the 96lbs). I'm out of answers. I too have Epilepsy. I too take Keppra. I too have tried Ensure drinks,(am currently taking Boost with extra calories AND Carnation Breakfast Essentials drinks). I don't do much exercise other than yoga which is very recent. I have been to my PCP, I've been to my specialists and rheumy, I've been to a gastro(I have GERD and IBS)and even a cardio for a heart murmur due to a random syncope episode who said to increase my salt and processed foods since i have no issues with cholesterol and generally have low blood pressure as well as blood sugar. I'm thinking my metabolism is super high or something. I have had my thyroid checked too numerous times and it's normal. One thing that will NOT go away even with my prednisone use for a year and a half now is my low complements. C3 and C4. I've also had issues trying to come off prednisone. My adrenals didn't want to kick in coming off of it last time so we had to go back up again after I got another episode of Pleurisy which caused the higher dosage the first time and now I'm currently on 6.5mgs of prednisone. It saddens me at times because I look ill and I don't like it. Not to mention the fact that the prednisone has caused muscle deterioration(no tone/definition)and I have NO boobs!(sorry guys!)but literally.....I just don't know what to do anymore...none of my clothes fit...I bought a new suit from Victoria's Secret for job interviews and a size 0 is too big. I'm at a loss truly. If anyone knows any way to fix this please let me know. I want to at least look normal again :/ I hope you all are well. Take care Lupie Friends! -Lupie Britt
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 2/23/2012 8:26 PM (GMT -7)   
Btw I drink the health drinks everyday and try to stick to a healthy diet(although I LOVE junk food especially chocolate!) I have added v8fusion drinks with the fruit and veggies once a day and then try to eat a veggie at least at dinner. I eat the healthier meals like lean cuisine and healthy choice etc...i eat 3 regular meals a day and then about 3 snacks(not counting spur of the moment junk food lol)...I drink gatorade a lot because with my meds I can't have juice within 2 hours before or after taking it so if i don't get it mid-day it ain't happenin lol....plus i can't drink OJ due to my reflux because it's too acidic. SO, just putting it out there that I DO eat quite enough and that's not the reason I don't gain....also...with the IBS....I don't have constant diarrhea or constipation, it fluctuates and has never really affected my weight. Only thing I can figure is that I have something wrong metabolicly....I just don't know what would be causing it or how to fix it.....
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

IslandDave
New Member


Date Joined Apr 2012
Total Posts : 3
   Posted 4/14/2012 5:29 PM (GMT -7)   
I thought I was the only one who didnt gain weight on the steroids. I'm 6'5'' and weighed 250 three months ago before my latest, most severe, and the flare that got me diagnosed with SLE and DM (dermatomyositis). I've lost 55lbs and am having to work on keeping my weight above 190. I'm attributing some of my loss to the DM which causes leg muscles to waste away and mine have gotten tiny, but since I was in the hospital a few weeks ago I've been on prednisone and plaquenil which is supposed to make you hungry. I'm no more hungry than ever, but I'm eating regularly.
Here's hoping that the weight loss stops and the muscle building can begin. I'm too pooped to do much exercise right now, but hopefully that will change soon. My friend suggested humorously that I should try medical marijuana, and while my appetite is fine, that might be a...... oh wait I'm not in a MM-friendly state.
SLE lupus and Dermatomyositis

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 4/16/2012 12:53 PM (GMT -7)   
Sorry I haven't been on for a while. My weight has been steady at around 97lbs now, but I'm pretty sure it is from the Neurontin I have been on for a couple of months now. I just started a medical leave so we're hoping I can concentrate on gaining a few pounds and getting rid of this gaunt anorexic look!! I really believe my weight loss is more of a pain and inflammation issue. The more pain I'm in the less appetite I have and my intestines become inflamed. I have had everything else checked out and that is the conclusion my RA has come up with. The trick is controlling the constant Flares!!
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