northerngirl
Distinguished member
- Joined
- Jan 9, 2008
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2007
- Country
- CA
- State
- BC
- City
- Kootenay
The ALS clinic forward this letter to me for mom today.
apparently they had a Canada ALS center confrence call Monday on how to deal with it and start studys.
She see's her GP tomorrow, Wish us luck!
Feb 7, 2008
As you may be aware, a study has just been published demonstrating a positive effect of the drug lithium carbonate in ALS. The drug was studied in 16 patients with ALS (who took lithium and riluzole) and these patients were compared with a similar group of 28 ALS patients who took only riluzole. The patients were followed for 15 months. During this time, the disease progressed significantly more slowly in the patients on lithium and riluzole compared with the patients on riluzole alone. At the end of 15 months, 8 patients treated with riluzole alone had died. No patients treated with the combination of riluzole and lithium had died.
What does this mean for you? This is only one study and it is a small study so we cannot be sure that lithium works in ALS. In general, scientists like to see data replicated at a separate site to be convinced that the data is definite. Nevertheless, given that the current study seems to be reasonably well designed and that the benefit seems to be significant, I think it is important that you are aware of this and that you be offered the opportunity to go on lithium if you choose.
What is lithium carbonate? Lithium carbonate is an old medication that has been used to treat bipolar disorder (manic depression). The dose used in this study was 150 mg twice daily with a goal blood level of 0.4-0.8 mEq/liter. In patients whose blood levels were less than 0.4 at this dose, the dose was increased to 150 mg three times daily. These doses are lower than those typically used in bipolar disorder. Nevertheless, you need to be aware that there are potential adverse effects. The levels need to be monitored very closely as severe toxic reactions can occur at levels of 2.0 mEq/L or greater. Kidney problems, dehydration or concurrent use of a diuretic medication can all increase lithium levels so, if you choose to go on lithium, you will need to have regular bloodwork to monitor your kidney function and you will need to insure you have adequate fluid intake to avoid dehydration. However, at the blood levels used in the study, the side effects of lithium, if any are usually mild and tend to resolve with time. Your doctor can discuss this further with you if you might wish to go on the medication.
If you would like a copy of the article, you can access it from the journal website free of charge:
http://www.pnas.org/cgi/reprint/0708022105v1
If you want to consider going on lithium, please either call the ALS Centre or your GP to make an appointment to discuss this. Although it will be easier for many of you to do this through your GP, it is likely he/she is not aware of this study. Therefore, I would recommend you bring a copy of this letter and the article to your GP appointment. If you do decide to go on lithium and it is prescribed through your GP, I would encourage you to let us know and to make a followup appointment with us, if not already scheduled, so that we can monitor how you are doing.
apparently they had a Canada ALS center confrence call Monday on how to deal with it and start studys.
She see's her GP tomorrow, Wish us luck!
Feb 7, 2008
As you may be aware, a study has just been published demonstrating a positive effect of the drug lithium carbonate in ALS. The drug was studied in 16 patients with ALS (who took lithium and riluzole) and these patients were compared with a similar group of 28 ALS patients who took only riluzole. The patients were followed for 15 months. During this time, the disease progressed significantly more slowly in the patients on lithium and riluzole compared with the patients on riluzole alone. At the end of 15 months, 8 patients treated with riluzole alone had died. No patients treated with the combination of riluzole and lithium had died.
What does this mean for you? This is only one study and it is a small study so we cannot be sure that lithium works in ALS. In general, scientists like to see data replicated at a separate site to be convinced that the data is definite. Nevertheless, given that the current study seems to be reasonably well designed and that the benefit seems to be significant, I think it is important that you are aware of this and that you be offered the opportunity to go on lithium if you choose.
What is lithium carbonate? Lithium carbonate is an old medication that has been used to treat bipolar disorder (manic depression). The dose used in this study was 150 mg twice daily with a goal blood level of 0.4-0.8 mEq/liter. In patients whose blood levels were less than 0.4 at this dose, the dose was increased to 150 mg three times daily. These doses are lower than those typically used in bipolar disorder. Nevertheless, you need to be aware that there are potential adverse effects. The levels need to be monitored very closely as severe toxic reactions can occur at levels of 2.0 mEq/L or greater. Kidney problems, dehydration or concurrent use of a diuretic medication can all increase lithium levels so, if you choose to go on lithium, you will need to have regular bloodwork to monitor your kidney function and you will need to insure you have adequate fluid intake to avoid dehydration. However, at the blood levels used in the study, the side effects of lithium, if any are usually mild and tend to resolve with time. Your doctor can discuss this further with you if you might wish to go on the medication.
If you would like a copy of the article, you can access it from the journal website free of charge:
http://www.pnas.org/cgi/reprint/0708022105v1
If you want to consider going on lithium, please either call the ALS Centre or your GP to make an appointment to discuss this. Although it will be easier for many of you to do this through your GP, it is likely he/she is not aware of this study. Therefore, I would recommend you bring a copy of this letter and the article to your GP appointment. If you do decide to go on lithium and it is prescribed through your GP, I would encourage you to let us know and to make a followup appointment with us, if not already scheduled, so that we can monitor how you are doing.