View Full Version : Lithium/creatine
Diane Rae
05-07-2008, 08:07 PM
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.
ZenArcher
05-07-2008, 08:34 PM
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.
wright
05-07-2008, 08:37 PM
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.
Diane Rae
05-08-2008, 12:31 AM
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.
Diane
PDaddy
05-08-2008, 01:26 PM
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... ;-)
