anyone else have problems with severe water retention?

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New Member

Date Joined Dec 2016
Total Posts : 8
   Posted 4/8/2017 6:22 AM (GMT -6)   
I have a huge problem with my ankle, leg and foot(usually always on my right side) get extremely swollen. Sometimes its so bad I can hardly lift my leg because its like the skin gets so tight. My rheumatologist tells me its not my lupus causing this but also cant telling me what is causing it then.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/8/2017 10:19 AM (GMT -6)   
The overactive immune system in Lupus often find strange places in the body to attack! I used to get swollen toes for no good reason - my Drs said it was just where my Lupus chose to attack that day.

Sounds like you ankle/leg/foot inflammation is a similar thing - Lupus deciding your leg is a foreign body that need to be attacked!

You might need to talk with your Dr if this continues much longer - generally a small dose of prednisone for a week or two will help knock out the inflammation.

(Sorry your Dr is doesn't seem to be aware that Lupus can do random things like this -- if the Dr is resistant ask for your inflammation markers to be checked, they should show something is going on. Only sometimes they don't!)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/8/2017 10:00:00 AM (GMT-6)

New Member

Date Joined Dec 2016
Total Posts : 8
   Posted 4/9/2017 2:04 AM (GMT -6)   
This has been going on for over 8 months!! I am currently having to take prednisone because my elbow hurts so bad and the swelling has not changed. Doc says my #'s are good and my lupus is quiet now so someone please tell me why this is happening!??!!

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Date Joined Apr 2006
Total Posts : 1344
   Posted 4/11/2017 4:17 PM (GMT -6)   
Lupus and water retention is usually due to lupus nephritis but can also be driven by meds like prednisone. You should see a nephrologist to make sure your kidney function is ok. I gained 20 lbs of water when lupus first attacked many years ago. Kidneys survived and have been doing well ever since but I do take meds to make sure of that.

Labs are not always an indicator of disease activity. How you feel is sometimes better. If your problem if from the meds or another medical condition your lupus numbers would not reflect that. Most of the labs are not really lupus specific and patients register labs differently. The longer I am around it the stranger it gets and the less absolute I am about what it can or cannot do. Lupus can attack any part of our body and has hit most of mine. Current print target are platelets.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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