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Diane Rae

New member
May 7, 2008
My husband was diagnosed April 2, 2008 and started taking Lithium (150 mg 2 x a day) and Rilutek a few days later. He has had his blood taken once a week for the last month. The Doctor told me yesterday that his creatine was 1.3 and that normal was 1.2. The doctor said that he did not want to increase the lithium because the creatine level was too high and we would risk damaging his kidneys. My question to the doctor was - If our only hope of slowing the progression of the disease was taking higher doses of lithium, and we can't do that because of the creatine level, then what do we do. The doctor had no response. So I asked if he should be drinking more water, to which the doctor agreed would be a good idea. My question is - can anyone help me understand all of this. How much lithium is needed to be effective, what is creatine and what level should it be at in order not to damage the kidneys. What can we do if anything to reduce the creatine levels. Is water the only options, and if so - how much water is needed. I wish had all the lab numbers, and I will ask for a copy of my husbands lab results the next time I talk with them. But in the mean time, can anyone help me understand this? I would appreciate any help cuz I am not feeling any compassion from the doctor.
The first thing to realize is that lithium is still an experiment. There has only been one study done and its results have been questioned. I'm not saying it does or doesn't work I'm simply saying that right now it is unproven.

Based on the study mentioned above the amount of lithium needed was based on blood levels of 0.4 to 0.8 mmol/l. The dosage required to reach that level is dependent on each person. Some get there at 2x150mg others at 4x150mg.

Creatinine not creatine is a waste molecule that is a good measure of kidney function. In males it is normally between 0.6 and 1.2 mg/dl. Drinking the water will help flush the kidneys. Doctors recommend 40oz or about 1.5 L of water per day although I know of some PALS drinking much more.

For right now I wouldn't worry about the lithium and focus on letting the kidneys do their job as your doctor recommends. Lithium isn't proven, kidneys are.
Hello Diane

It isn't creatine that is high . . . it is creatinine, the waste product that is formed when creatine is broken-down. Creatine is contained in muscle and when the muscle breaks-down (which is occuring as a result of ALS) the creatine is metabolized . . . that is . . . broken-down into creatinine. It's up to the kidneys to get rid of the creatinine because it is toxic to the body. If the levels of creatinine are too high, it makes the kidneys work harder and you then run the risk of kidney damage. A level of 1.3 isn't too bad but if you make the kidneys work harder (which they will if you take lithium) then they might not be able to get rid of creatinine like they usually would, which means the creatinine levels will get even higher . . . and again . . . creatinine is toxic to the body. Extra water will probably help but who knows for how long. I wish I had something more positive to say. I would discuss more options with his doc or maybe consult a specialist (a nephrologist . . . that is . . . a kidney doctor).
Please take care.
thank you

That you for clearing this up for me - it makes more since to me now. This is all new to me and I am trying to get educated about ALS. The doctors have not been very helpful in patient education. Perhaps they don't feel that were are ready to hear and comprehend what they are telling us, as the diagnosis is so new. But we have moved fairly quickly to acceptance, and want to understand what is happening. Thank you for your help.
Guess who is drinking a lot of water now? ME! :mrgreen: Thank you, my wonderful wife "Diane Rae", for starting this thread, the info is VERY helpful for us... ;-)
Hi Dianna
I was on Lithium form 1973 to 1998 In 1998 my doctor advised to stop taking lithium as my creatine level was now 1.8 It should have been 1.1

My Kidney level at the end of last year was 4.1 and the doctor said I would be on diaysis in early 2010 . This did not happen I was using Mannatech dietary supplememnts which had immediate impact on my health
I am now on a low dose of anti depressants and the main problem with kidney failure is excessive drinking This stopped on using mannatech products
My creatine levels are noe 3,0 with a trend down wards
I do not know if this from using mannatech products or because Iam more hyrated when I do the blood test Stay tuned ans I shall know after the nect blood test in June 2010
There was a report on April 5, 2010 that both Canadian and American researchers had completed a study that showed that lithium taken in conjunction with riluzole was no more effective than taking riluzole alone. They stopped the trial early as no benefits were found.

Suggest that your doctor get the May issue of "The Lancet" where there is an article on this study.

This may be a little off topic, my husband is not on lithium he had bloodwork done in
December and his blood creatinine level was low, the Dr. said that is due to muscle loss.
Has anyone experienced low creatinine or maybe has some info on that.

Thank you
It is a good thing to have a low creatinine level. It means that your kidneys are doing their job well.

Has anyone heard or know anything about Sodium Channel Blocking. I am thinking of bering part of a trial in Sydney Australia. It is a 14 mth trial. What they are hoping for is along with Rilutek this will slow down the progress of the disease further?
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