Icodextrin Extraneal Discussion

[george40]

Hello all, I spoke with my Dr. about Icodextrin. I learned about it from this forum. Anyways, he mentioned he looked into it a while back however had not checked into the advancements of it in a while partly because it was so expensive that most insurance companies were not covering the costs for patients. I shared how some members of a community shared experiences of dialyzing twice per day with 11 to 12 hour dwells. My neph said, no way, unless they still had kidney function while dialyzing. The PD nurse chimed in and stated that patients in other clinics have been doing very well and that they are getting good clearances. My neph replied, the last research he read dextrose solutions yielded better clearances. The nurse encouraged him to look at the latest research. So, I am doing my own research.

for those who use (d) icodextrin extraneal...

1) How many exchanges do you perform daily?
2) What strength were the solution (%)
3) Did you have residual kidney function while using icodextrin?

[KICKSTART]

I use Extraneal (UK)  but im not sure if Icodextrin Extraneal is the same? It more than likely is i expect.
Right extraneal is used for long dwells, im on a cycler so my daytime dwell is extraneal , when i did manual CAPD my night time dwell was extraneal. While it is very good at pulling fluid off it DOES NOT pull off any toxins. So you cannot use it all the time in place of your other fluid.
Extraneal is usually only used once a day or night because of this.
There is only one strength .
Yes i still have some residual kidney function , but its getting less and less.
So your doctor is probably right in saying no way are people only dialyzing twice a day with it , i think you might of misunderstood its use ?
Great for pulling fluid off ..doesnt pull of toxins 

[Rerun]

Sounds like your doctor better spend a little more time reading than golfing!  Burns me up that we have to tell them what is hot and what is not in the dialysis world!

                               

[CCStan]

We also asked about extraneal.  Got poo paa'd "too expensive" doesn't work, blah blah blah.  Stan needed to pull off fluid, and is absobing fluid.  We feel the run around about at least giving it a try is the cost factor.  Our opinion it is a not cost effective for the clinic itself.  JMHO

[peleroja]

I tried the Extraneal and it gave me the nastiest, hottest rash.  Guess it wasn't for me.

[Red from Canada]

I carry 1500 ml  of extraneal from morning til bedtime.  Usually get anywhere from 100ml to 500ml extra fluid off with each initial drain.  In Canada, cost is not a factor.  If your Neph says you need it, you get it.  I find it works very well.

[george40]

Sounds like your doctor better spend a little more time reading than golfing!  Burns me up that we have to tell them what is hot and what is not in the dialysis world!

                               

I agree with you. I would think Drs want to know the latest and greatest for treating their patients.

[george40]

I use Extraneal (UK)  but im not sure if Icodextrin Extraneal is the same? It more than likely is i expect.
Right extraneal is used for long dwells, im on a cycler so my daytime dwell is extraneal , when i did manual CAPD my night time dwell was extraneal. While it is very good at pulling fluid off it DOES NOT pull off any toxins. So you cannot use it all the time in place of your other fluid.
Extraneal is usually only used once a day or night because of this.
There is only one strength .
Yes i still have some residual kidney function , but its getting less and less.
So your doctor is probably right in saying no way are people only dialyzing twice a day with it , i think you might of misunderstood its use ?
Great for pulling fluid off ..doesnt pull of toxins 

Hi KickStart, Yes, I believe it is the same thing. Thanks for the info.

[rookiegirl]

George40,

I was the one that sent you the post about changing twice/day with 7.5% (Purple) Icodextrin in the morning good for 12-16 hours and 2.5% (Green) Dextrose at night.  I sometimes use 4.25% (Red) in place of the Green on a needed basis to pull off more fluid.

I did CAPD for almost 1.5 years before I had my transplant.  Yes, I had some residual kidney function.  My Neph at Wake Forest University Baptist was an expert in PD who travels around the world training other Neph.  I just love him and hate I will no longer see him due to high demand of his need to teach/speak/train other Neph around the world.  The good news is that his replacement worked under him for many years.  My Neph was Dr. John Burkhart.  Maybe you can get your Neph to give him a call to talk about other options for PD.  I know Dr. Burkhart did his research very well and my function for those 1.5 years were very good.

Good luck,
Rookiegirl

[Hanify]

I use icodextrin during the day, but am on the cycler at night.  This means I don't have to do a bag at all during the day.  If I were you I'd be asking about getting on to a cycler.  Believe me, it's sooooo good not having to do anything during the day.  I'm not sure how it works over there, but here (New Zealand) there's a waiting list.

[george40]

I use icodextrin during the day, but am on the cycler at night.  This means I don't have to do a bag at all during the day.  If I were you I'd be asking about getting on to a cycler.  Believe me, it's sooooo good not having to do anything during the day.  I'm not sure how it works over there, but here (New Zealand) there's a waiting list.

Hi Hanify, I am recently off the cycler. I have the cycler here at home. Right now its a great bag warmer... lol  Everything was working fine when one day the catheter shifted and every since I cannot drain laying down. I have to stand up on each drain. The surgeons think by changing from a pigtail catheter to a strait tip catheter that the problem might be solved. We just had a newborn (5 months old now) and surgery just wasnt right at the moment. Also, since manuals worked fine, Im doing it this way. Initially it took 2 surgeries to get the catheter placed properly, so Im not anxious for another one. This is why I am doing manuals now.

[KICKSTART]

George ..you can still use Extraneal doing manuals .. it is used for your overnight fill.

[george40]

George ..you can still use Extraneal doing manuals .. it is used for your overnight fill.

Hi Kickstart, Oh I dont know I'm learning about it now. But, read Rookie girls post, she did 2 exchanges per day using extraneal for 1.5 years prior to her transplant.