Massive water retention that shifts and extreme thirst

Hello,

I was hoping somebody could let me know if this is a symptom of lupus, if they have any remidies, or if it is likely something unrelated.

I have been taking a small diuretic (25 mg of hydrothyrochlorzide) for several years to regulate a bit of a water retention issue.  Initially it was thought to be the result of hormones (5 lb fluctuaion a month)

I was diagnosed with lupus about 6 months ago - and the only other medication I am currently take is 150 mg/day of immuran.

For the last couple of months, I have been getting puffier and puffier.  Last week I gained 10 pounds (I'm only 113 lbs normally) of water. 

The strange thing is that the water weight seems to move around a lot.  Yesterday I had ENORMOUS breasts (An F cup bra didn't even come close to fitting) and my rings wouldn't come off even with soap.  Oddly, my legs were very toned looking, and my abs were flat with a six pack.

This morning I wake up, and my rings are so lose I can shake them off my fingers.  My chest is way way down (a D cup), but my stomach is as big as when I was 5 1/2 months pregnant.  My legs and face are also really puffy (my sheets left indents on face and thighs for over 4 hours afteer I got up, and even my baggy sweat pants are leaving bright red rings down the side which last for hours.

It's frustrating because my shape changes so dramatically from day to day, and I feel like a gian sausage.

I was under the impression water weight was usually just in the hands/feet.  But mine seems to move all over the place.

Does anybody else expereince such a massive shifting of water retention, and such a high precentage of body weight gained.

I am also extremely thirsty, and drinking about 6 literes a day - but it still won't quench my thirst. 

Any suggestions on any tests I should have run, ideas of what is causing it, or an other remidies?  I have already eliminated all salt, processed food and sugar from my diet.

Thanks in advance!

 

Not diabetic, nor do I have issues with my thyroid.  I have had both checked regularly becuase of my other side effects which have now been attributed to lupus (extreme fatigue, hair loss on my head etc.)

I do have a lot of body hair, but that only sprung up from when I was on the prednisone.  I've been off for 8 months now, and it seems to be going away.

I did have autoimmune hepatitis (enzymes at 1200 and 1800) - but it is better than normal now, and is sitting at around 15.  I still get that checked every week.

It just seems to come out of nowhere, and then moves around.  I feel like a giant marshmellow, but my skin hurts and tingles wherever it is vastly expanded. 

Is that much water retention a symptom of a lupus flare?  Everything else seems to be feeling great at the moment.

I'm not entirely sure about this, but I seem to remember reading something about hydrochlorathiazide and Lupus as not being very compatible.  I'd get in to see  your doctor right away.

Hi, there are two types of diuretics, one type that is typically usedwith liver conditions, lasix/lactulose, and loop diuretics that work completely differently and are used more with kidney problems (loop of henle), so there is a reason why people are given one over the other. I startedgoing deaf on lasix within a week. It worsened my edema and made me nuts. HCTZ helps the swelling in my case, even though I have liver issues, apparently something else is going on too. You needto be very careful before you try switching that.

You really need to see a hepatologist regarding your low liver enzymes and autoimmune hepatitis. GI docs and rheumatologists are no where near qualified to make judgements about your liver. Liver enzymes go up with inflammation, they drop as fibrosis and cirrhosis set in. The liver makes these enzymes and they are a measure of recent attacks on itself or other organs and whether it is repairing damage. The sickest and most scarred my liver has ever been was when my ALTs were zero. Low ALTs after really high ones are a bad sign, but most docs are too stupid to know this, unless you go to a good hepatologist. THis may actuallybe a sign your liver condition is worsening, because it sure isn't repairing itself with the low levels.

There are several good articles and site about liver disease. I woud wory more about the advil, which is very hepatotoxic and a definite no-no for anyone with liver disease. Even when I had mild liver disease I was not allowed to take it. If you havent had an ultrasound and liver bx recently, or ever, its another good reason to see a good hepatologist. Autoimmune liver disease is relatively rare and it takes a good hapatologist to deal with it and the hepatologist should be clearing all your meds. I would worry much more about the aspirin and advil, and request something less hepatotoxic. The HCTZ is relatively mild compared to that.

The swelling sounds like liver, but I didn't want to scare you, only because it moves around and waxes and wanes so dramatically. Swelling from liver disease is called ascites, and sometimes it needs to be drained as it can cause life threatening complications, though that's when its really bad. I have a great info site with a specific really helpful q&A if you email me I can send you it. It will explain all this and you will see patterns inthe care liver patients receive, dietary concerns. BTW, there was a great article on probiotic yogurt working as well as LASIX/lactulose (The diuretic lasix, not the sugery) for ascites and fluid retention associated with liver disease.

I hope you have a hepatologist and he or she is very good and you are getting the thorough testing and treatment you need. Right now, my alts, which weren't as high as yours recntly, but were high for a while, now came down to 17 and it is because I'm getting fibrosis from the TB meds I'm on, but my other docs were raving they were low and my hepatologist was saying that often happens, which is why so many people wth advanced cirrhosis don't get tx until they have major problems.

Hopefully now your flare is over, the fibrosis will heal, but I would still check with the hepatologist about the swelling. Sorry so long, just in the same boat somewhat.

Wow after reading this I am very concerned about myself. I have the same exact problems as honeybee_100 and I have appt the 7th with my regular doctor, I think I will be discussing this. I am so swollen even my breasts are very sore and I had a TAH in 2004 so I know it's not hormone related. Cured4real? can you email me that information on the liver stuff? Thanks in advance.

Very similar here. The breast issue was assumed to stem from taking Spironalactone, and the weight was blamed on "cakes and pies." The doctor said nothing when I lost 30 lbs in a month, but always does the cake and pie song and dance when I gain 25 to 30 lb.
I have grown accustomed to fluctuating 30 lbs over time. My feel also feel that stretching/tingling when I swell up. My husband squeezes my feet to alleviate the pain and is amazed when he sees them slowly fill back up. He said I'm like a squishy water balloon.