PatientsLikeMe ™

Should I take lithium to treat ALS?

PatientsLikeMe does not make recommendations about the use of treatments or provide medical advice.  Our role is to openly share the outcomes and experiences of patients.  Patients and their doctors should collect and discuss the evidence including, FDA data, the clinical trial, pre-clinical studies, and the data from PatientsLikeMe and make individual shared decisions based on the risks and potential benefits.  It might be helpful to read our blog post on lithium as well, Does It Work? Lithium and ALS.

Is PatientsLikeMe running a clinical trial on lithium?

No. PatientsLikeMe is observing changes in the outcomes of PatientsLikeMe members who have indicated they are on or off lithium.  This is sometimes called a natural experiment. Members of PatientsLikeMe automatically share their data to help other patients understand their disease and treatments.  Members that indicate that they are on Lithium will be included in the analysis as 'treated', while members who do not indicate they are taking Lithium will be included in the analysis as background or 'controls'.

I want to take Lithium. How do I get it?

Like all prescription treatments your doctor must prescribe lithium. Lithium is not approved for use to treat ALS by the FDA but your doctor may decide to prescribe it "off label" if they feel that the potential benefits outweigh the risks.  Lithium can have significant side effects and requires frequent blood level monitoring and should only be done under close supervision by an experienced clinician.  The Forum is a good place to ask patients about their experience dealing with their doctors around lithium.   

I am on lithium. How do I make sure I am included?

You must join the ALS community on PatientsLikeMe and then using our standard system enter your diagnosis history, your current information, and the treatments you are on.  It is helpful if you enter some historical data as well.  If Lithium is one of your treatments then you are automatically included in the analysis.  You can do this without sharing your name or email with anyone.

I am not on lithium. How can I help your study?

Having information about ALS patients who do not use Lithium is important.  It helps us understand something about whether there are differences between the people who do and do not choose to use Lithium.  This is important because it may tell us about other things besides Lithium that affect the course of ALS.

Please join PatientsLikeMe and enter your data so that you contribute it to the ALS community as a whole.

How do I see the results?

The ALS lithium page has a complete list of patients on lithium with their blood levels.  This page can be filtered by patient characteristics to make it easier for you to see the experience of people like you.  By filtering the results, you will see outcomes (ALS FRS-R score) on the graphs for only those patients with the selected characteristics.  Looking at the data this way may show you cases that are interesting, but it may not provide the best view of how Lithium is affecting most patients.  As the experience of the community grows, we will add filters and other tools that will help you to understand how specific groups of patients fit into the overall picture.

I don't understand the graph

Each line on the graph shows a patient's ALS FRS-R scores, before and after starting lithium.  The ALS FRS-R is a self-reported measure of the impact of ALS on your body's functioning in 4 major domains – breathing, fine motor movements, gross motor movements, and movements of muscles in the throat, tongue, jaw, and face.   If lithium changes how ALS is affecting a patient, the slope of the line defined by the FRS over time after starting lithium, will be different from what it was before the patient started taking lithium.  If there are too many lines on the graph to read it, try filtering the results so that fewer are displayed.  Note that changes in individual patients can happen for many reasons and may have nothing to do with the lithium.

When can you answer the question "does lithium work”?

We don't know when or ultimately even if we can effectively answer this question.  Even large scale double blind clinical trials can fail to find small effects. When treatments or interventions occur in an uncontrolled situation, it is hard to be certain that they, and they alone, produce the outcomes we are trying to measure.  Our success will depend on many variables. Perhaps most important is how many patients share their data and the quality of the data. The more patients that are sharing their data and the longer the patients are on lithium the more power we have to detect an effect.  We are working on statistical models for use in this kind of analysis to determine when changes in progression rates are significant both at an individual and group level.  We will be adding these features to the graphing and patient pages as we go.  Our goal is to help provide data for patients to make effective decisions and we are committed to solving that problem.

How do I know I am entering enough data?

PatientsLikeMe has a data quality management system using stars.  Patients who enter their diagnosis information, some history, and their current status have three stars.  An explanation of the star system can be found here.  If you are interested in providing intensive data around a specific question we recommend that the ALS-FRS and the symptom survey be taken at least monthly and be entered for the start date of lithium and several dates before the start of lithium.

Can I just send you my data and have you enter it?

Each patient or their caregiver should create an account and enter their own data into the PatientsLikeMe system.  If you have any questions or need assistance please contact support@patientslikeme.com  and we can help you.  It is important that the data be entered on the PatientsLikeMe system because we store and collect the answer to each ALS FRS-R question and also data on FVC, and symptoms.  We plan to look at the effect of lithium on all these different aspects of ALS.  With the full set of FRS questions answered we can both model the future state of individual patients and we can determine, using our data on thousands of surveys, which specific questions indicate reliable changes.  By looking at the background data of all FRS scores and questions we can increase the power of our analysis and have more confidence in the results.

How do I enter my lithium blood levels?

If you have entered that you are taking Lithium on this site, you can update your blood level results by going to your treatment update page, and clicking on the Lithium type you are using. You will see a link there to add your blood levels.

If you are taking Lithium but have not recorded that on PatientsLikeMe, you will be able to add blood level readings when you add the Lithium treatment to your profile. If you have any problems please contact support@patientslikme.com for help.