I'm concerned about fluid build up

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 11/24/2008 11:24 PM (GMT -6)   
I know that when you take steroids you can swell up and get puffy. but the doctor says I need to get off the steroids before they will do a transplant. So over the past 6 days I have only taken 2 10mg pills in 6 days.
Well my health care worker came over today and told me I looked terrible. She said my face is swollen more then normal, my ankles disapeared because my feet are so swellown and my belly looks big enough to make me look about 8 months pregnant. I've been having some dull aches in the left side of my chest under my ribs. which could be from all the swelling in my belly. Has anyone ever heard of getting off of the steroids doing that. She told me this morning to take an extra lasix to see if I would get rid of some fluids that way. I'm trying to drink decaf coffe and water and herb tea and avoid the soda because of the salt. I just don't know what to think of this.
any ideas
love ya
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/25/2008 9:02 AM (GMT -6)   
((((((((( Carol )))))))))

Is that your liver swelling? If you want to get off the steroids, it should probably be with the blessing or at the knowledge of your prescribing doc. I know its not a med you want to be taking but we need to get you, in one piece, to the day of transplant. If you aren't even on a list and getting off the pred is making you worse . . . I would go for quality of life. Did you taper the pred? Are you splitting the pills and the 2 tabs were taken in pieces over the 6 days? Not sure where you were at with the taper.

Oy! I'm praying for "peace of mind" for you regarding how to take meds and get the most out of each day!! Hang in there! and DO call your doc.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/25/2008 9:10 AM (GMT -6)   
I take potassium tablets and it takes the fluid down. Also regulates my heartbeat. Take potassium with food. turn

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 11/25/2008 10:42 AM (GMT -6)   
Thanks Rosie and Barbjean,
Barbarajean I do take pottassium ever day because I'm on lasixs thanks and welcome to the group!

Hi ya rosie, well I got to say that I felt pretty intellegent until I did the trivia today lol. As for your questions. I did not taper but I did take them 1 day on 1 day off. Boy the pulm and the internist told me I have to get off of them but they didn't tell me how I was suposed to do that. My lungs are filling up so I took 5mg hoping that will help. I can't get tested until I'm off and my bones start to improve.:(.
I dont know about the liver but After 4 days without pred. it looked likeI was about 8 months pregnant. My health care worker said I looked really bad. and I am so tired.

gonna lay down
love ya
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 11/25/2008 10:46 AM (GMT -6)   
Carol, Please call your prescribing doctor and get medical direction on how to get off prednisone. Stopping cold turkey can be very very dangerous. I know of a woman (a doctor's wife) who stopped cold turkey and died. I have no idea what dose she was on, but please taper off with your doctor's instructions.

I'd also be concerned about the swelling and wouldn't try to treat it myself. Please call your doctor Carol.

Let us know you're ok.


SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 11/25/2008 12:52 PM (GMT -6)   
UGH, Carol.  (((hugs)))
Yeah, you need some guidance on how to do this.  I'd call your doctor.  I'm not sure if the swelling is from the taper or if it's a sign that your body is saying, " NO! Don't taper off of that stuff!  I need it!"  Is there something else you can take to replace the prednisone?  I wonder if increasing your plaquenil would help?  Really, you need some professional guidance on this. 
Keep drinking your water.  Sometimes that swelling can be minimized by a little extra hydration. Don't go nuts on it though!!  The last thing you need is wacked out electrolytes!!  AHHHHHHH!
Let us know what you find out okay.  I'll be praying for you,
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

34 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. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 11/25/2008 12:53 PM (GMT -6)   
Edema usually is a symptom of a kidney problem.  It is possible that the prednisone was controlling the situatioin.  Many of us with lupus have proteinuria which can cause severe edema.  I gained 20 lbs in a matter of a few days twice until we got my kidneys under control with lisinopril.  Lasix (a diuretic) will reduce edema but will not treat the underlying kidney problem.  I took both meds and still do 3 years later.  However, my kidneys have been functioning perfectly and there is little kidney damage.
Seems like your doc is treating the symptom rather than the cause.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 11/25/2008 2:33 PM (GMT -6)   
I had the same problem with plaquenil and always LOSE fluid on steroids. Part of that is that the treatment for autoimmune liver disease is steroids and when your liver is bad, you retain water called ascites. Lasix and lactulose (spelling?) are usually prescribed together in liver patients because studies and experience has shown that just lasix alone will not removethe fluid from certain liver problems. I can direct you to a site where you can get lots of info.

Also, I got MORE fluid on lasix, but it goes away with HCTZ. Like Bill says these drugs are different types of diuretics lasix usually more for the liver and HCTZ often with the kidney, one's a loop diuretic and one is another kind, I was told. So it's important they figure out where the fluid is coming from. I have liver disease and lasix and aldactone are common combination but I have kidney problems too. Kidney problems are common with liver disease.

Here's a link to what I could find on ascites--it can become infected, so while many of us have some water around the belly/organs, it can get serious. This is from the liver failure support group--there are lots of people there with varying degrees of problems from NASH to transplant and IMKindly provides lots of good info you can't get anywhere else.

lactulose is a drug that binds ammonia and is given to some liver patients. there is a new study about probiotic yogurt being potentally as effective as lactulose(they are still studying it) so I always have some every day.

Autoimmune liver diseases are not usually just liver diseases, but more like autoimmune vascular/liver diseases and can affect parts of your body outside of the liver because blood flow is messed up (everything goes through the liver). If you cant take steroids, will they let you take plaquenil or something else? Plaquenil helps me alot, I had a lot of fluid build up in a few days when I stopped it. I had no idea it was doing so much. I didn't know it but plaquenil is prescribed for some rare liver conditions, though in lower doses than we take.

I really hope you feel better. IMKindly can answer a bunch of questions if you have any and even if it isn't liver, she has some medical stuff about the different types of edema and their causes and the different diuretics, esp. from a liver standpoint.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 11/26/2008 10:55 AM (GMT -6)   
(((Carol))) I've been thinking of you lots lately. I'm so very sorry for the struggle you're going thru. Stopping pred suddenly sure isn't gonna help and it can cause your heart to stop. (We all know what a big heart you have, but come on!) I agree with everyone else that a call to your doc is in order for both the pred taper and swelling. Take it easy Sweetie. Love ya. Butterflake 

Dx: SLE ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien, flexeril, multi vit, C, flaxseed oil, acupuncture    Donna

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