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MooseMom
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« on: December 31, 2011, 09:18:24 PM »

I have read posts from quite a few pre-D IHDers who have mentioned diuretics.  My neph has never mentioned them to me, and so I don't know anything about them or whether or not I will ever be prescribed them.

I notice a minimal amount of edema, but nothing that I can really point out to my doctor.  Skinny ankles run in my family, so some slight swelling that I may notice isn't picked up by anyone else.  Any swelling I do notice is always gone by the morning.  I don't have any fluid around my heart or my lungs.

My egfr is only about 15...at what egfr does edema usually become evident?  Or is that just a stupid question?  If I begin showing evidence of troublesome edema, would I be treated with diuretics as a last ditch effort before having to initiate dialysis?

Do diuretics put extra pressure/workload on already very damaged kidneys?  Is there a risk that extra peeing would catapult you into renal failure sooner rather than later?

What are y'all's experiences with this sort of drug?

Thanks so much! 
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gothiclovemonkey
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« Reply #1 on: December 31, 2011, 09:30:19 PM »

ya know, i dont know much about them but i have been on them since 04, i didnt start d until 07...
i personally think that im on toooo much of them, and when i take them, i tend to actually pee less? which seems odd to me. and i also swell more.... isnt it supposed to do the opposite?
 :waiting;
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KarenInWA
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« Reply #2 on: January 01, 2012, 12:47:18 AM »

I was on a diuretic briefly pre-D, back in 2010. We had a couple of hot days here in Seattle, and I developed pretty severe edema in my ankles/cankles. My neph put me on a low dose of HZT, I believe the full name is hydrochlorthyazide, or something like that. I was to take it only as needed, or on hot days. I can't remember what all happened as a result, but I think it took care of most of the cankle issue.

Cankles suck! Amlodipine (sp?) is another drug that can cause that. Not a diuretic, but a BP med. Usually comes in 5mg tabs, and is prescribed in either 5, 10, or 15mg doses. I do not recommend it.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
gothiclovemonkey
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« Reply #3 on: January 01, 2012, 07:40:21 AM »

wait what?? what does amlodipine cause???
see, i really do think my meds make me feel worse! But if i dont take them, i am seen as non compliant! what do i do?
im on amlodipine, also what i think is a very high dose of furosemide (80mg, 2 pills, twice a day) and metoprolol,

you know, idk if this is safe or not, but sometimes when im feeling a bit over watered, i take a very hot shower. it seems to make me feel even a tiny bit better. its not a huge difference, but showers always make me feel better and idk, but seems the extreme heat makes me sweat it out or something.

i forgot to add also in my last post, i wouldnt think taking anything would be really "good" for the little bit of kidney function, but as my doctor has told me several times "The good outweighs the bad"
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Riverwhispering
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« Reply #4 on: January 01, 2012, 07:46:02 AM »

Someone mentioned Asparagus as being a good food for this and also mentioned it being high in potassium.... here's what I have from the NutritionData.com website on it   It isn't so high when you are keeping track of your potassium intake per day.

Asparagus 1C raw 134g (Potassium 271mg) (Phosphorus  69.7mg) Calories 27
 

Just have a few cups of this veggie and maybe give up a fruit or some other veggie in place of it if retaining water is an issue for you.
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MooseMom
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« Reply #5 on: January 01, 2012, 11:17:22 AM »

I've taken amlopidine for years without any problem.

Cankles/water retention really isn't an issue.  I notice that toward the end of the day, my ankles are ever so slightly rounder, but my doctor would never notice it.  It's just that I've read about diuretics so often from pre-D people on this board that I was starting to wonder if there was some benefit that is unknown to me.  I know that sometimes edema can sort of sneak up on you, and I'm not sure if this "sneaky edema" is dangerous.
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ToddB0130
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« Reply #6 on: January 01, 2012, 11:22:23 AM »

If I recall,  my doctor has discouraged me from regular use of prescribed diuretics.  I *thought* he said it affected my creatanine (doesn't EVERYTHING ??  Ha !!).   So I never use them unless he's told me to, which has only happened once, if I recall.  There are some foods that qualify as 'natural' diuretics though,  right ??  I tend to use compression socks most of the time (SEXY !!!) to help with fluid retention in my legs.
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MooseMom
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« Reply #7 on: January 01, 2012, 11:30:35 AM »

My neph has never mentioned the word "diuretics", and I don't know if it'd because he thinks I don't need them or if he is not a fan of them for his patients.  Not that I'm going to ask to start taking yet another medication... ::)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Cordelia
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« Reply #8 on: January 01, 2012, 12:54:29 PM »

From my understanding, they're only used for severe edema......I'm only familiiar about them, for during post pregnancy---For me, personally, I was only on them post pregnancy when the swelling was severe around my ankles. I had pre-eclampsia bad in all my pregnancies, because of my polycystic kidneys.

Post renal failure over a year ago, I have had some mild swelling, but no one has ever prescrbed them for me for just 'mild' swelling.  I think unless your edema is severe, which you say yours isn't, I wouldn't worry about it.

Not sure if that helps any.

I'm on amlodipene also, have been for a  over a  year. Are you all saying it can cause fluid retention? I don't understand. Please clarify.
« Last Edit: January 01, 2012, 12:58:35 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
ToddB0130
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« Reply #9 on: January 01, 2012, 01:11:31 PM »

Not so sure about the amlodypine dealio myself ........... I know my doctor took me off of it for a short time when I did have fluid retention,  but I don't know if that was specifically why ......... now I take 5MG two times per day.  I would say that sometimes I do get some mild edema, but I don't know that it's specifically related to that med or not.
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KarenInWA
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« Reply #10 on: January 01, 2012, 02:44:26 PM »

My neph put me on amlodipine 5mg a day right before I started D back in April. He told me that edema was a primary side effect. My ankles and feet swelled up so bad that I could only wear certain shoes! After about a month, he took me off of that, and so began a whirlwind with different BP meds til we finally found one that didn't make me cough or take away my voice. When I first started D, I still peed a somewhat normal amount, so I don't think it wasa fluid retention per se. After I got off the amlodipine, my swelling was much easier to manage.  I still had it, but to a much lesser degree.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Cordelia
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« Reply #11 on: January 01, 2012, 03:20:38 PM »

Karen, what BP med are you on now, if you don't mind me asking?
« Last Edit: January 01, 2012, 03:42:04 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
KarenInWA
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« Reply #12 on: January 01, 2012, 03:57:02 PM »

Cordelia, I am currently not on one! I had my transplant on 11/23! The transplant neph did put me on doxazosin 2mg once a day for a short while, but now I have stable, normal readings. I was also on that when I was on D, along with Benicar 20mg. At one point, I had to stop both because my BP would get too low during D, and was normal otherwise. Then, shortly before my transplant, it went high again. I resumed the Benicar, and would have resumed the doxazosin too, if there was more time. This was per advice of my neph.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Cordelia
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« Reply #13 on: January 01, 2012, 07:08:06 PM »

That's great you're not on one! Thx for the clarification.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
kristina
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« Reply #14 on: January 02, 2012, 05:52:34 AM »


Do nephrologist prescribe diuretics according to the type of kidney-failure?

After I was diagnosed in August 2006 with ESRF with 6 months to go ‘till Dialysis,
I remembered being prescribed diuretics when my kidneys first failed in 1971.
When my kidney-function picked-up again in 1971 I was taking a diuretic to assist
my kidneys to “get rid of” my water retention.
 
This is the reason why I have researched for a diet-diuretic (Asparagus) on the Internet
to assist my ESRF-kidneys now as much as I possibly can,
so that my kidneys (10 - 12.3 % function) are not under any strain...

I am very excited about yajokha’s experiences and her recovery from Dialysis with diuretics.

I never heard this was still a possibility when a patient was already on Dialysis,
but it confirms what I was told over 40 years ago by a professor
when I was given the diuretics to get my kidney-function recovering again...

What do you think: Do nephrologist prescribe diuretics according to the type of kidney-failure?

Best wishes and good luck from Kristina.

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justme15
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« Reply #15 on: January 02, 2012, 06:22:57 AM »

My doc prescribed lasix for me in october.  I had been dealing with mod/severe swelling in my legs , and my blood pressure was very high.  The lasix is working wonders! my BP is now under control and the swelling is gone. I don't seem to be peeing more than usual,though. I'm hoping that the lasix will buy me a few more months/years? of being dialysis free.
i also take amlodipine, I've been taking it for about 11 years, but have never had problems with swelling while taking it.
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Deanne
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« Reply #16 on: January 02, 2012, 07:32:50 AM »

I've been taking lasix for a couple of years. I started it at 40 mg/day and went up to 80 mg/day about 4 months ago, but my neph said I could take 40 or 80 mg/day, depending on how much fluid I felt I was retaining. I was on amlopidine and it caused quite a bit of fluid retention. Cankles get uncomfortable by the end of the day. I switched to doxazosin now, so I'm dropping the lasix back down to 40 mg/day since I've rediscovered my ankles.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #17 on: January 02, 2012, 04:08:27 PM »

It's so interesting to see how amlopidine can cause edema in some patients but not in others.  My mother took it for a while, but it caused severe swelling in her, but she was on dialysis at the time.  So, she gave it to me. 

Maybe this med causes slight edema in me...that had never occurred to me.  Hmmmm....
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
malaka
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« Reply #18 on: January 03, 2012, 11:24:25 AM »

MM:  some of us have nephrotic syndrome along with CKD. Its marked by swelling.  Face (especially around the eyes, like Rocky in that old movie when he's in the boxing match) in the morning, but gravity pulls it down to the calves and ankles as the day progresses.  It also causes fluid retention about the lungs and is therefore associated with congestive heart failure. 

Lasix (a cheap drug) is often used.  Currently,  I'm taking 120 mg in the a.m., 80 at midday if needed (salt is a problem -- so I have to be careful) and 80 mg at night. 

If you don't have nephrotic syndrome, you don't need this high dose of lasix.  It really doesn't cause me trouble, except I'm up 3 or 4 times every night for you know what.
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MooseMom
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« Reply #19 on: January 03, 2012, 12:53:55 PM »

Malaka, I technically have nephrotic syndrome since I am leaking protein; "nephrotic syndrome" is just an umbrella term for any renal disease, like fsgs which is what I have, in which there is evidence of proteinuria.

Yes, I've heard a lot of people talking about lasix, and when I realized that I didn't even know what that was or what it was used for, I thought I'd ask.  Do you find it pretty effective?  It must be doing something if you are up 3 or 4 times a night!  Do you take lasix along with other bp meds?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #20 on: January 03, 2012, 03:30:31 PM »

I've noticed it makes a big difference in how often I make visits to the bathroom. I take lasix in the morning and make several trips to the bathroom through about lunchtime. Not so much in the afternoon. I still have to get up once during the night, but I think that's just kidney disease in general, not from the lasix.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
malaka
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« Reply #21 on: January 04, 2012, 01:57:07 PM »

The overt symptom of nephrotic syndrome is swelling -- no lab tests needed to see that.  Sure, I leak protein, too, but lasix is a "loop diuretic" which helps get rid of water and salt.  I don't think it acts to keep albumin in the blood or to reduce creatinine levels.  Its an older drug and quite cheap.  I wasn't afraid to start it, and have no trouble (except mulltiple awakenings at night!) with it.  Besides, the pills are pretty small and easy to swallow.
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