Tracking your use of Lithium to Treat ALS



We know that many community members are aware of the new publication, Lithium delays progression of amyotrophic lateral sclerosis by Fornali et al. The publication describes the results of a trial of Riluzole (Rilutek) plus Lithium (Carbolithium/lithium carbonate).



Since that publication a number of community members have initiated treatment with various forms of lithium (lithium carbonate, lithium orotate, lithium sulfate).



Our goal is to, as much as possible, answer the question of whether lithium is an effective treatment in the real world by following the patients who decide to use the treatment. We are not advocating or even suggesting that patients should take lithium, but if they and their doctors decide, on their own, to try it we believe that by openly sharing the data we may gain some insight into its effectiveness.



We will be building models of individual patient progression both on- and off-lithium. We presented the beginnings of the progression modeling based on type of onset for ALS at the ALS/MND meeting in Toronto in December 2007 and we can use the data on the 1,600+ patients in our system help determine if lithium is having any impact on progression for those patients who chose to take it. A video version of the PatientsLikeMe progression talk is available here.



Jamie Heywood and I will be posting periodic updates and graphs of the results from analysis using your complete data history and the new modeling we are developing. We will as much as possible communicate how accurately we believe we can describe the meaning of any differences we find in the experience of those who use and do not use lithium.



To do this effectively we need additional information. An important component of answering the question is not just how much lithium is prescribed. Tests should be ordered to determine whether the level of lithium in the blood is at the desired level. Patients may be tested more frequently when they start on lithium, and the results used to adjust your dose. Then tests will be conducted periodically to monitor the blood level to ensure it remains at the proper level.



To allow you to track this testing, we have added a 'treatment' called Lithium Blood Level Monitoring. We recommend that you use it to record the date of each blood test and the result. The units for the result you receive will usually be either mmol/L (millimoles per liter) or mEq/L (milliequivalents per liter); please enter the test value and units for each test.



You must also make sure we have a full history of your FRS (Functional rating scale), FVC (Forced Vital Capacity), and diagnostic history. We will only be including data from 3 star patients so please work to ensure your information is complete. Specifically it is very important to fill in your history of lithium use and blood test results as accurately as possible, along with your use of other treatments and experience of symptoms. If you need help or have any suggestions, please contact me at mmassagli@patientslikeme.com .



Thank you for your interest and attention.

Michael Massagli

Research Scientist

PatientsLikeMe Inc.

http://www.patientslikeme.com/forum