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pinkyD
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« on: March 22, 2016, 04:32:48 AM »

I was started on icodextrin/extraneal almost 2 weeks ago, and a few days ago I started to notice a rash all over my chest, arms, and back. They're small, pink, chicken skin-like bumps. I've done some research, and apparently the most common adverse effect of icodextrin is an itchy maculopapular rash, often with peeling skin on palms and soles. I have little to no itching, and no peeling skin. I'm not definitively sure this is related to the icodextrin, but I have no history of allergic reactions or hypersensitivities, and the only thing that has changed is that.
Has anyone experienced an icodextrin reaction before?
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Charlie B53
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« Reply #1 on: March 22, 2016, 05:44:09 AM »


I have been using Ico for about 12 hours nightly while doing manual exchanges before switching to the Cycler about 2 years ago, now my long dwells are still about 12 hours but daytime.

I haven't seen a reaction yet that I have noticed other than some itching.  Not to say I never will, just not yet.

I hope thiswill pass, that if it is the Ico that your body may yet adjust to the ???? exposure.  If that is a good choice of word.

Have you recently started Pd, or just recently changed your prescription to include Ico?

Doyou plan to see a Dermatologist?  I am assuming your Neph may not have a treatment other than to suspend your Ico.  Which may be a good way to test your theory.  The possibility is it may take some time after ending exposure for your body to rid itself of whatever element within the Ico that may be causing this reaction.  A few days may not be sufficient.  It could easily be far more than a week if it is something that the kidneys usually handle to remove.

Keep us informed how this goes.

Take Care,

Charlie B53
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kickingandscreaming
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« Reply #2 on: March 22, 2016, 09:30:31 AM »

Since rash is the most common reason for stopping the use of ico, I would find it highly suspicious that you have developed a rash since starting it.  Many in the medical profession are very slow to admit reactions to meds, etc.   I once took a blood pressure drug and my entire body broke out in a rash.  They all insisted it had nothing to do with the drug. So I continued to itch and scratch and be totally miserable.  Then I took the law into my own hands and stopped the meds.  My rash magically disappeared.  A while later I challenged myself and started the meds again.  Again, I got the rash.  So finally my med team acknowledged that it was indeed the medication. 

I am still on manual PD (due to Baxter's now 2 year shocking and shameful shortage of cycler fluids).  I was having a lot of trouble with removing fluids recently and my legs were really swelling up every night.  After my PET, it was discovered that I am a high-average transporter.  So after I raised a ruckus and they changed my prescription so that now I do 4 fills of either greens or yellows daily, and dwell ONLY 3 hours, and at night I do just a drain so I go to sleep dry.  That has made an enormous difference to my fluid balance.  I have a high kt/v (2.3) so I know I can get adequate solute clearance in 3 hours.  So I no longer have a long dwell that necessitates using ico.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #3 on: March 22, 2016, 07:25:28 PM »


IIRC in training they had a chart showing the ideal dwel time by % of solution.   Their reasoning was once the sugar % in the solution is partially absorbed by the body, the difference in sugars are no longer so great.  The water transfer rate slows, and can even reverse.  You can regain some of that water that had been pulled off but not yet drainedout.

Yellow was only TWO hours

Green was Four hours

Red was Six hours.

If you was to check your blood sugar immediately prior to filling, then again in two hours and again at four hours, without taking any insulin you might see the sugar rise from the solution.

So if using Yellows, you can further reduce you dwell and possibly remove just a bit more water.



I am so glad this is beginning to work out well for you.

Are you wearing those socks yet?

Take Care,

Charlie B53
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kickingandscreaming
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« Reply #4 on: March 23, 2016, 05:53:02 AM »

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Yellow was only TWO hours

Green was Four hours

Red was Six hours.

That's kind of the exact opposite from what I was told-- which was to restrict red to 2 hours and yellow and green were both 4-6 hours with no distinction between them.  Curious how there can be such a discrepancy in protocol.  Of course now I am doing a mix of yellow and green, but dwelling just for 3 hours.
Quote
Are you wearing those socks yet?

Nope.  I don't need them at all since I adjusted my RX.  No swelling.  And I no longer feel like I'm swimming in sugar-- which was how I felt before.  I never got hungry because I was living off all the sugar that was backflowing into my system.   I don't do insulin or any med s for my Diabetes.  I am very strict in my intake of carbs.  I realize this may be changed over time as the PD fluids take their toll.  I have an endocrinologist who is monitoring the situation.  But I am very reluctant to add diabetes meds to my routine especially since I've been controlling it for so long just with diet (HbA1c in the low 6's).  Here's hoping.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #5 on: March 23, 2016, 01:47:18 PM »


I'll have to open my phone at next clinic and take a picture of the chart in the training conference room.  I could have it wrong.  But when you look at the sugar concentrations and how the difference drives the water absorption.  More sugar more water, more time before the %'s tend to even out and then it is time to drain and start fresh again.

It may be possible your clinic trains to lessen exposure time to possible insult of high sugar concentration, thus preserving your membrane.   Sounds good, and really is a good idea if possible.



Alas, I am but a Man.  We are often wrong.  According to many women.  Especially my Wife.  But I think I am developing 'Selective Hearing', and She doesn't post here.

LOL



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pinkyD
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« Reply #6 on: March 23, 2016, 11:21:05 PM »


I have been using Ico for about 12 hours nightly while doing manual exchanges before switching to the Cycler about 2 years ago, now my long dwells are still about 12 hours but daytime.

I haven't seen a reaction yet that I have noticed other than some itching.  Not to say I never will, just not yet.

I hope thiswill pass, that if it is the Ico that your body may yet adjust to the ???? exposure.  If that is a good choice of word.

Have you recently started Pd, or just recently changed your prescription to include Ico?

Doyou plan to see a Dermatologist?  I am assuming your Neph may not have a treatment other than to suspend your Ico.  Which may be a good way to test your theory.  The possibility is it may take some time after ending exposure for your body to rid itself of whatever element within the Ico that may be causing this reaction.  A few days may not be sufficient.  It could easily be far more than a week if it is something that the kidneys usually handle to remove.



I've just been to the neph today and was told to stop the icodextrin and day fill with a yellow bag. The PD nurses suggested I discontinue ico for a while and wait for the rash to clear, then rechallenge. They have had several patients who upon rechallenge did not develop another rash. One thing to note is that they all had rashes on their hands and feet, and the nurses were really surprised about the presentation of my rash--all over the chest, back, arms, and has even spread to the groin area now (TMI!). They have never seen something like this before!

I have been on PD for nearly 1.5 years, and my residual function has been steadily falling. I do a large quantity of dialysis--1 manual, then immediately onto the cycler for 10.5 hours for a total volume of 15200L daily. My kt/v has dropped to 1.7 and my doc and nurses want me over 2.0. As a diabetic adding even more dextrose is not ideal, so we decided to give ico a try. I'm hoping a rechallenge does work and won't trigger another reaction.
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pinkyD
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« Reply #7 on: March 24, 2016, 02:43:35 AM »

I found this article that describes the exact unusual presentation of my rash. The pictures are spot-on!

http://europepmc.org/articles/PMC3263069
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kickingandscreaming
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« Reply #8 on: March 24, 2016, 01:12:08 PM »

Quote
I found this article that describes the exact unusual presentation of my rash. The pictures are spot-on!

http://europepmc.org/articles/PMC3263069

But this article thinks it's unethical to challenge.  I wonder what they know that your team doesn't.   I once had a rash like that--total body--from a blood pressure med. It was awful.  I sure hope (with my drug sensitivities) that I am not one of the 10% who reacts to ico.  I am still on manual, so no ico for me at the moment.  Good luck with whatever alternative you have available.  I am Type 2 and I worry a LOT about all this sugar pulsing through my system on PD.  So far I'm managing without meds, but I doubt that can go on forever.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #9 on: March 24, 2016, 04:54:39 PM »

............... I am Type 2 and I worry a LOT about all this sugar pulsing through my system on PD.  So far I'm managing without meds, but I doubt that can go on forever.

I 'Officially' became Diabetic about 6 months after starting PD 3 years ago.  At first I was insulin resistant, having to take nearly three times what most consider normal.  After maybe a year and a half of slow but near steady weight loss.   A lot of it water but still an amount of fat, my insulin resistance has gone.  I had become 'normal as far as a Type 2 can claim.

Fast forward another year and a little more weight loss, I am now pretty much insulin 'sensitive'.

Two units of fast acting will now knock my sugar down 60 points AND I had also ate lunch!  Whatever gain from lunch was also gone.   I haven't been using the fast insulin for almost three months now.  I'm pretty much afraid to.

I still take my small dose of slow insulin before bed, and still have a minor sugar rise when I test first thing in the morning.  Reading anywhere from 90 to 130.   I think part of that is from the PD solution.

Just keep checking your sugar.  I write mine down EVERY time.  It is far easier for me to see how mine changes on paper than to try to scroll back on my meter.
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