Lactic Acidosis and Extraneal (Icodextrin)

[Willis]

Hello everyone...I survived an 8-day hospital stay and I'm still recovering from a severe case of lactic acidosis. Way back in Dec or so of last year I started using Extraneal (icodextrin) for my day fill. Icodextrin is a starch-based dialysate rather than dextrose-based like the usual stuff. For my long day dwells it was great because rather than absorbing half of the fluid each day, I was actually getting positive UFs, even after 12-15 hours of dwell.

Alas, as time went on these last few months I started getting weaker and weaker. Terrible cough, fatigue, throwing up, loss of appetite. My neph kept giving me higher and higher doses of EPO and couldn't understand why my hemoglobin kept going down, down, down. Then finally I got to the point where I literally couldn't even untie my shoes. My boss had to drive me home from work and the next day the dr started some serious tests because every muscle and tendon was inflamed and frozen and I was in the worst pain of my life. I couldn't even sit up without help.

My potassium was 6.7 (normal for me is about 4), my phosphorus shot up over 10, my Hgb dropped to the low 6s, and most alarming was my white-blood cell count of 47+. So within hours I was in the hospital where the first night they gave me 2 units of blood and had me hooked up to the heart-monitor. Now at that time they still had no idea what was wrong so started treatment by giving me 2(!) bottles of SPS solution to clean me out GOOD and get rid of the excess potassium and by the next day it was back down to the 4s. But that's just were the fun really began...

I'm a high transporter on PD and don't even have any Yellow (1.25%) solution in the house because I just suck it up like a paper towel in water. So of course, with my brain totally not functioning I didn't notice that the hospital PD they gave me that first night was of course 1.25%. And the doctor prescribed EXTRA dialysis with five 3000ml fill cycles. And in the end, after all of that, my UF for the night was a miniscule 70ml. Where did all that fluid go? Well, just say I gained 18 pounds over night. I looked like the Pillsbury Doughboy and my skin was stretched so tight that I was afraid to cough.

Well, after 3 or 4 other doctors had worked me over and decided I wasn't infectious (3 days of pain while waiting) they finally gave me prednisone which almost miraculously reversed 90% of the inflammation within about 4 hours of the first dose. So then I was waiting and waiting ready to go home...but then my heart went into atrial fibrillation and they wouldn't let me go home. Up to that point in my life I've never had a whiff of heart problems.

The point of this post though concerns my use of the icodextrin. Having had a chance now to research this after the fact in more detail it seems down on about page 16 or so of some long white papers from Baxter that icodextrin is contraindicated for patients with any sort of starch/acidic sensitivity. In their studies of icodextrin PD users, these EXACT symptoms were listed--cough, reduced Hgb, vomiting, loss of appetite, general fatigue, and arrhythmia. I nor my doctor ever suspected I would have such a negative reaction before the fact (perhaps the doctor SHOULD have anticipated the possibility). The whole process occurred somewhat silently for several months until my body reached the crisis phase. Fortunately I made it to the hospital and survived.

If anyone is using or considering the use of icodextrin (Extraneal), I recommend testing for lactic acid levels and/or starch sensitivity before use and then being watchful for lactic acidosis symptoms. Trust me, no one wants to go through what I just went through!

 

[MaryD]

That doesn't sound like fun,Willis.  I hope you're home safely by now.

I have been on extraneal for nine months now.  I think we get tested for lactic acid fairly regularly here.  I googled 'contraindications for' dianeal, extraneal and physioneal, and they all sound unpleasant.  My physioneal is supposed to reduce the acidity.

What are you going to use for your long dwell now?

[lmunchkin]

Man Willis, what an ordeal!  Thank God you had the sense to figure out what was wrong, even if by chance.  You are still here, and thats what's important.  I don't know, but I don't think Extraneal was even used when John did PD. I remember asking you or someone else what exactly was Extraneal?

Im just very happy you caught it Willis.  And very very happy you are at HOME!
God Bless,
lmunchkin

[billybags]

Wills that is so scary. My husband has been using extraneal for about 2years or more, he has the same symptems, terriable cough, they put this down to BP tablets, fatigue, his heart, throwing up, he does this about once a fortnight, loss of appetite,they say he is malnurished, tiredness, atrial fibrillation bad heart, he is also a high transporter. They have been trying to get his HB up for months it has been 8 UK so the Epo has been going up for a few months. Last month it has gone to 10 whether that is a fluke I dont know. Bloods next week so we will see. I would never have believed the solution could cause all this, I am so glad it has been sorted out. Will ask the nurse for a lactic acid levels and/or starch sensitivity test.

[Willis]

An update:

After 4 weeks of reduced amounts of prednisone I finally used up the last of the supply (as had been planned). Ooops.

24 hours later my original symptoms returned with a vengeance and even worse than the first time. My left leg was more or less paralyzed. Off to the ER. The medical staff is constantly asking what is the pain level 1-10? Oh believe me it was 10! Then SIX hours after being admitted they still haven't given me so much as a tylenol. But they finally got my doctor on the phone (this was about 3am Saturday morning) and she told them to immediately give me prednisone.

It's amazing...that stuff had me sitting back up and walking (with a cane) again within a few hours. They released me on Sunday. I'm back to about 75% of normal already. My neph says she's never seen this sort immunilogical reaction to icodextrin before nor is there any indication in the literature of such chronic reactions. So even though I quit using icodextrin (Extraneal) over a month ago it is still in control and the prednisone has merely been masking the effects.

[MaryD]

That is quite a severe reaction. You might have to down your prednisolone slowly to get off it.

When I had polymyalgia rheumatica (basically you ache all over for reasons unknown) I self diagnosed, 1/ pulled muscle from loading son's gear into truck on his way to university.  After four weeks I went to chiropractor and he couldn't fix it. Then 2/ empty nest syndrome (it's all in my head).  Finally, four months later, one day when it took me three hours to shower and dress my self and I had to go and have a good lie down before I could put my shoes on, I decided to go to the doctor.  Prednisolone fixed it within 2 hours.  But it took 18 months to get off it.

Best wishes