Time to End the Aluminum Crises

[obsidianom]

Sadly, after nearly a year of telling us after the recall, everything is fine, six months after telling the units that they have a new sodium lactate supplier, it still goes on Judah. (Ben Hur fans understand)

I went for my monthly visit today. I have been on the bags since July.mmy latest level is less than5. However, other patients seen in our unit and one with some of the same nurses have levels of 5-10. NxStage claims its is over, but it isn't. They still have low level poisoning. Stay away from the PureFlow. Even low levels of aluminim have chronic effects,

We are still using the bags. My wifes aluminum dropped to 22 on the bags so far form 44. Unfortunatly with her fistula damaged for 2 months it didn't drop a lot recently. Now hopefully with the repaired fistula it should drop more.

[caregivertech1]

Our number last week was 7 down from the 8-12 level the last 2 months. We're using all pureflow. Our neph says below 10 is ok. I'm not convinced.

[Hemodoc]

If it was the neph on dialysis, below 10 would not be their level that they would accept. The data is that there is no safe level of aluminum. I will post a study showing that a level of 0.85 mcg/liter resulted in significant Hb drops. This is lower than the current levels allegedly in the current PUreFlow.

[Hemodoc]

http://www.degruyter.com/view/j/cclm.2000.38.issue-3/cclm.2000.032/cclm.2000.032.xml

[Maggie and Jeff]

Still using hanging bags and this month labs say Maggie's aluminum is 5.

[caregivertech1]

Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.

[Hemodoc]

Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.

All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.

You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.

[obsidianom]

Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.

All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.

You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.

Peter, ANY ADVICE??    We have been on bags for 4 months at least and the latest aluminum last week was 24.  It is stuck at 22 to 26 each month. All other numbers are great including hemoglobin at 11.0.    The fistula is working great now .  We are only using Zero Water  . There is no other source of aluminum.

[noahvale]

*

[Hemodoc]

Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.

All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.

You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.

Peter, ANY ADVICE??    We have been on bags for 4 months at least and the latest aluminum last week was 24.  It is stuck at 22 to 26 each month. All other numbers are great including hemoglobin at 11.0.    The fistula is working great now .  We are only using Zero Water  . There is no other source of aluminum.

You may consider seeing a toxicologist if it persists. Bone biopsy is the best aluminum test, but who wants to do that. Her serum levels may simply be a reflection of the continued mobilization of bone deposition. Studies show it takes about a year to clear the bone stores.

I remever you stated a while back that your well water is high in aluminum. Reverse  osmosis and distillation is the best method of removing aluminum. I can't find data on carbon filters for aluminum. Actually one site mentioned that as well.

http://www.purewateroccasional.net/wtialuminum.html

If there are no other sources, the stores of aluminum in the bones will eventually mobilize. I have a certain amount of residual renal function which most likely helped me clear my low levels of aluminum.

Deferoxamine therapy according to Scott Rasgon, MD is a treatment worse than the disease. It is associated with Staph sepsis and fatal Mucormycosis. At the levels most are reporting, I can't imagine the risk benefit of DFO would favor going ahead with that treatment.

[obsidianom]

Thanks Peter and Noahvale.  We will continue to moniter closely.

[Maggie and Jeff]

It took almost a year for Maggie to drop to 5.  If you recall we switch to hanging bags right off.  We had already cut other sources of aluminum. And Maggie's was never that high.

I even used the used paks to filter the well water.  Due to the new packaging of the paks back then we ended up with lots of new paks just before we stopped using paks and switched to hanging bags.  I'm still using paks to filter all the ice Maggie eats.

We just switched to nocturnal 8 hours over night.

[caregivertech1]

For the first time since the aluminum crises began our number taken this week was <5 which is exactly what it was in Jan. 2013. I don't think Spectra labs can detect or report levels less than that. We've been using Saks only for about 4-5 months with an average range of 8-12 (down from a high of 28). The Saks (302) used for this 5 week period have expiration dates of 11-2016. Don't know when they were manufactured. Just maybe the contaminated Saks have cleared the system after 2 freaking years.

[Hemodoc]

I have been on bags since last July. After 4 months, aluminum was less than 5. However, this month, it is now at 7.

What I have feared for quite some time is that NxStage might go to the same sodium lactate producer as they use for the SAKs. I will have the clinic follow my aluminum levels for the next three months. If it continues to rise or fail to go below 5', then I will be done forever with NxStage.

[PrimeTimer]

I have been on bags since last July. After 4 months, aluminum was less than 5. However, this month, it is now at 7.

What I have feared for quite some time is that NxStage might go to the same sodium lactate producer as they use for the SAKs. I will have the clinic follow my aluminum levels for the next three months. If it continues to rise or fail to go below 5', then I will be done forever with NxStage.

I almost dread the next time my husband has his aluminum level tested. Life is tough enough as is it. We should not have to dread a dialysis product or device or, for that matter, anything that is suppose to be helping him.

[Hemodoc]

My aluminum last month was 7 after being undectable for several months on the bags. This month my aluminum level is now 8. My phosphorus is now much higher than normal which happened the last time NxStage poisoned me with aluminum. I am done with NxStage. I will be switching to the baby K as soon as possible. I have some choice words for this company which I am biting my tongue to contain. There is no acceptable level of aluminum and there is NO reason for any significant levels of aluminum with Purac able to supply sodium lactate for I fusion at less than 0.11 mcg/ liter. Obviously, NxStage is using a different provider for sodium lactate in both the bags and the SAKs. There is now no reason to try and avoid aluminum by using the bags. It is time to DUMP this horrible company making business decision to poison all of their patients with aluminum poisoning. Unbelievable!!

[caregivertech1]

Yeah, I reported <5 in March and our April # was 8.....on SAKs.

[Maggie and Jeff]

Please ask your clinic let you take an AAMI on the dialysate.

Include the lot # with the test and if there is aluminum present ask your doctor to contact nxstage. 

[Maggie and Jeff]

Well it's back

.007 instead of <.005

ref205 lot# Q1603845

[Simon Dog]

Well it's back

.07 instead of <.05

Is the safe limit considered .05 or .005?

The analysis you show lists aluminum of .007, not .07

[Maggie and Jeff]

Thanks I corrected my post.

Safe level?

Is there one?

Less than .005 is preferred.

Anyway we are testing Maggie Aluminum level to see if it has come up as well.

Last time Maggie's Rheumatoid Arthritis flared up. 

And she is just starting to have those symptoms again.

Not saying they are linked just observing a possible correlation.