Hi everyone. I got my first symptoms 3 months post partum-- 5 months ago.
I was diagnosed 1.5 months ago with SLE and sjogrins.
Thank God, I'm feeling pretty good right now. Joint pain and stiffness is down. Yea, I'm exhausted, but within reason.
I'm nervous because of just how much weight I lost in the past couple of months. In 2 months I went from 132 to 116. Some of that I'm sure is losing the pregnancy weight. BUT, since I'm still nursing (and I tend to hold on to an extra 5-10lbs while nursing) I'm nervous that when I stop in a couple months my weight will plummet. Right now, my weight is in the healthy range (I'm 5" 2.5-- so optimal range is 108-122 or so)
My endo thinks my thyroid is slightly hyper, so that may account for SOME of it.
I just wonder--- has anyone else encountered substantial weight loss? What happened?
I have been eating healthier, but I also eat a LOT-- I'm always hungry.
Lupus causes weight loss and also the plaquenil your taking and i also have an underactive thyroid gland which goes hypo at times although i'm on the right amount of thyroxine in my system and when that goes hypo which it is at the mount my weight drops very quickly.
I'm 5" 8ins tall and i'm 9st and can drop as low as 81/2 and with all the meds i take which are fattening for adding weight which doctor's have commented on, i'm very thin, so as long as you look ok there's not much to worry about but your doctor does need to run a blood test on your thyroid to make sure besides putting you on meds if you need it.
The following symptoms comes with Lupus, which you'll see weight loss or weight gain.
We also have a seperate site if you've not joined for sjogrens syndrome as i also have it, here's the link for the site if you want to join. www.sjogrenssyndromesupport.org
Lupus episodes, or flares, are usually noted by a worsening of some of the following symptoms:
Achy joints (arthralgia), arthritis, and swollen joints, especially in wrists, small joints of the hands, elbows, knees, and ankles
Swelling of the hands and feet due to kidney problems
Fever of more than 100 degrees F (38 degrees C)
Prolonged or extreme fatigue
Skin lesions or rashes, especially on the arms, hands, face, neck, or back
Butterfly-shaped rash (malar rash) across the cheeks and nose
Anemia (oxygen carrying deficiency of red blood cells)
Pain in the chest on deep breathing or shortness of breath
Sun or light sensitivity (photosensitivity)
Hair loss or alopecia
Abnormal blood clotting problems
Raynaud's phenomenon: fingers turn white and/or blue or red in the cold
Seizures
Mouth or nose ulcers
Weight loss or gain
Dry eyes
Easy bruising
Anxiety, depression, headaches, and memory loss
The link below for plaquenil also shows for weight loss.
Hello. I am just the opposite. The put me that darn Prednisone and I gained 50 pounds in 3 months. My neighbor was recently diagnosed with Lupus and when she took the Prednisone, she lost at least 30 pounds. Things are different for us all I guess. I have had Lupus for 19 years and never even been on Plaquenil. I have been on Azathioprine. I am sadly waiting to get into a new doctor. I pray it’s soon. Anyway, try Ensure or something along that line hun. My daughters used to lose weight from ADHD medicine and I got them Pediasure and it helped so much. I really hope you get it under control. I could always donate my fat if you would like. Seriously though, either insure or Boost I think it is. Good luck and stay blessed.
Congratulations on the birth of your baby. Although I haven't given birth recently (o.k. 18 years ago) but in the last 10 years I have gone up and down in weight several times. I keep 4 sizes in my closet. I have lost 40 lbs since Dec. My doc is keeping an eye on it, but as Terri said, it's dependant on the meds, your pain level (appetite decreases with pain) and other factors.
If your doc feels there is reason for concern he/she will definitely run tests.
In the meantime, maybe a sundress for the summer, which I have found work well when I am going up and down.
A large majority of members have gained weight through prednisone because it's a steriod drug but it's all down to the individuals metabolism.
Plaquenil is'nt a steriod med and it treats both DLE/SLE....when you finally get a new doctor i'd suggest mentioning the plaquenil :)
Destiny Scott said:
Hello. I am just the opposite. The put me that darn Prednisone and I gained 50 pounds in 3 months. My neighbor was recently diagnosed with Lupus and when she took the Prednisone, she lost at least 30 pounds. Things are different for us all I guess. I have had Lupus for 19 years and never even been on Plaquenil. I have been on Azathioprine. I am sadly waiting to get into a new doctor. I pray it's soon. Anyway, try Ensure or something along that line hun. My daughters used to lose weight from ADHD medicine and I got them Pediasure and it helped so much. I really hope you get it under control. I could always donate my fat if you would like. Seriously though, either insure or Boost I think it is. Good luck and stay blessed.
I do...... the same thing happened to me .. I had a baby October 23rd... rapid weight loss after. (but not nursing my baby passed away) I went from 149 im now 124. I have something called POTS syndrome that may be affecting it...... but were still trying to figure it out - ive had every test under the sun :/ but your not alone! our stories sound very simular
Your POTS Syndrome (Postural orthostatic tachycardia syndrome ) is causing you your weight loss because your body is getting dehydrated all the time it's causes weight loss quickly....A link for member's who don't know what the disease is :)
I do...... the same thing happened to me .. I had a baby October 23rd... rapid weight loss after. (but not nursing my baby passed away) I went from 149 im now 124. I have something called POTS syndrome that may be affecting it...... but were still trying to figure it out - ive had every test under the sun :/ but your not alone! our stories sound very simular
Pots, I am so sorry for your loss dear. That hurts my heart for you. God and blessings be with you.
Potslupus said:
I do… the same thing happened to me … I had a baby October 23rd… rapid weight loss after. (but not nursing my baby passed away) I went from 149 im now 124. I have something called POTS syndrome that may be affecting it… but were still trying to figure it out - ive had every test under the sun but your not alone! our stories sound very simular
A large majority of members have gained weight through prednisone because it’s a steriod drug but it’s all down to the individuals metabolism.
Plaquenil is’nt a steriod med and it treats both DLE/SLE…when you finally get a new doctor i’d suggest mentioning the plaquenil
Destiny Scott said:
Hello. I am just the opposite. The put me that darn Prednisone and I gained 50 pounds in 3 months. My neighbor was recently diagnosed with Lupus and when she took the Prednisone, she lost at least 30 pounds. Things are different for us all I guess. I have had Lupus for 19 years and never even been on Plaquenil. I have been on Azathioprine. I am sadly waiting to get into a new doctor. I pray it’s soon. Anyway, try Ensure or something along that line hun. My daughters used to lose weight from ADHD medicine and I got them Pediasure and it helped so much. I really hope you get it under control. I could always donate my fat if you would like. Seriously though, either insure or Boost I think it is. Good luck and stay blessed.
Yes definitely a good site on the disease and the reason why i know about it is because i'm always searching on diseases which can occur with Lupus and many more...anything unusual that shows up and i'm onto it...just ask DeAnne the moderator. lol
Since being diagnosed i just can't help myself and when other's go HUH that's through ignorance and not the intelligence to see what someones going through. :)
Potslupus said:
thanks Tez I didn't think of it that way ; oh and a good site for POTS is dinet... :-) . btw how do you know about POTS tez? usually people go HUH
but your not alone! our stories sound very simular