Extraneal

[Willis]

Finally talked my neph into letting me using Extraneal for my day fill.

Well, what's a few more boxes in the living room? 

My PD nurse said they only had one other patient using Extraneal (out of about 30 or more at 4 clinic locations). That patient has diabetes and the Extraneal helps with that. I'm not diabetic, but my weight has been stuck and I'm hoping with the Extraneal that I may be able to lose another 10-15 pounds.

It's a hassle for the doctor and nurses and one more thing for them to worry about and have auditors running behind checking on them so it was a mighty effort to convince my doctor to let me give it a try. (I'm sure any extra cost comes off the top of their bundle payment too.)

I think what tipped the scale most was that my kt/v level was right at the minimum last time and the doc thinks the Extraneal will help with my adequacy. 

 

[MaryD]

I hope the extraneal helps with your weight.  I am using one every night and through to lunchtime next day.  I am not diabetic, but since peritonitis I have gone from being a low transporter to a high transporter and I have started putting on weight (not fluid).  Now I'm taking more care with keeping my yellow bag dwell at six hours or less and my extraneal at a minimum of 12 hours those five kilos are coming off with very little change in diet or exercise.  One of my PD nurses told me that a yellow bag equals one Mars bar.

I can't see why it was so traumatic for your clinic to arrange the change for you though.  Extraneal is quite run of the mill here in OZ.

[komomai]

Willis, hope the extraneal works out for you.  I've been using extraneal for 2 years now.  The only thing that seemed vague was the response from my Doctor here in Okinawa, Japan.  He said I can leave it in for 6-8 hours and I should just use one bad a day, what have you heard?

[billybags]

In the UK, if you are doing PD, four bags a day you are only allowed to use extraneal if you are, say going on a long journey or if you need to be out all day , got to have a good reason. My husband is on APD machine and his last fill every night is 2000 extraneal and that takes him form 5-30am till 5pm when he has to do a manual. He loves being able to go all day.

[Willis]

Willis, hope the extraneal works out for you.  I've been using extraneal for 2 years now.  The only thing that seemed vague was the response from my Doctor here in Okinawa, Japan.  He said I can leave it in for 6-8 hours and I should just use one bad a day, what have you heard?

I was told that to use Extraneal the dwell should be 8-12 hours. That is exactly within the parameters of my current day fill.

 

[Tío Riñon]

I too had to self-advocate get Extraneal prescribed.  Following a nephrectomy in early summer, my UF and adequacy were down.  Since I work full time, I normally have fluid in me from early morning to early evening before I go on the cycler and found that fluid was often absorbed.  This resulted in low initial drains and varying UFs. 

After reading about Extraneal, I pushed to get it and finally got my clinic to give me a PET which determined that I was a high transporter.  My doctor still wasn't going to give me Extraneal until I cited some protocols which supported my situation and the Baxter company nurse backed what I stated to the clinic nurse when she called to determine the circumstances under which Extraneal should be prescribed to patients.  My initial drains have been improved every since. 

It pays to be an informed patient!!

[Ricksters]

I've been using extraneal for my long daytime dwell for the last two months....gotta say it beats the regular fluid hands down for me!  No more low drain alarms because my body absorbed too much fluid, not more weight going up due to absorbing fluid.  Am slowly loosing the weight I gained over the last year, about a lb. a week.  And my last kt/v test improved as well!  I know that it has to be re-approved (is that even a word?) every 3 months, so I am hoping they don;t take it away from me!  And my long dwell is about 12 hours.

Ricki

[travbug]

I have used extraneal the last two months since I went on the cycler.  The medication guide in the box  says Extraneal  is for the long dwell exchange (8 hours to 16 hours) in peritoneal dialysis.  I leave it from in 16 hours because my clcler to now set for 7hrs.  (Was .   

[The_Vincester]

Extraneal sounded perfect for me, so I asked my doc. Well, Fresinius does carry it - so I can't get it. Why would not they not carry something that sounds so beneficial to many patients.

My doctor said that it can cause some issues like misreading of blood sugar levels, but nothing that couldn't be managed. He did say it was more expensive.

[MaryD]

I'm told extraneal is twice as much as dianeal pricewise, but as you leave it in for twice as long the cost shouldn't be an issue. 

When I started extraneal Baxter issued me with a kit with a bangle to warn that I was using extraneal, and a folder of paperwork which I was supposed to take with me if I needed to go to hospital.  When I queried all this with my PD nurse, especially the bit about possibly incorrect glucose tests she told me that most sugar tests now won't be stymied by the extraneal - even the ambulance paramedics if I'm found unconscious in the street.  As I go straight into the renal ward if I have to go to hospital I was told to dispose of the frightening folder thoughtfully.

Extraneal has been a blessing for me, and in Australia it is quite commonly used

[MsMia]

I am glad to see people who had positive results from extraneal. I was very excited to learn I would be switched to it for my daytime fill (hoping it would help with weightloss) only to break out in a horrible rash that then took a month to clear up. I was really bummed but am still progressing with losing weight so it was worth the try.

[amanda100wilson]

Vin ester, Extraneal is made by Baxter. Extraneal is the brand name,.  the medication name for it is icodextrin.  Not sure if they have an equivalent.

[Lexxtech18]

Does anyone know if there is a Fresenius equivalent to Extraneal? I was going to switch to PD, but the nurse advised against it since they do not carry the Extraneal (I'm guess because it's a Baxter product.) So there would be no reason for me to do PD if I can't get the Extraneal as I would have to fill/drain every 2 hours or so.