Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
Hi I was hoping others who are on or have tried mexiletine could chime in with their experience. Apologies in advance for the length of this post.
Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told there is a possible drug:drug interaction between amylyx and mexiletine and that they want me to start mexiletine at just once per day (150mg) first for a few week while they monitor me, then they will let me try going up to twice a day (total=300mg) with continued monitoring.
I was also told dizziness is a normal/expected side effect.
So I took my first dose of mexiletine this morning shortly after my morning amylyx and other AM meds. About 15 minutes later I became suddenly extremly dizzy and unsteady and my clonus kept going off all over my body (jaw, knees, ankles, wrist) though not each area at the same time (that would have been nuts).
I also became suddenly very sad and anxious and started crying from feelings of sadness. My husband and PCA (helper) were both present trying to assist me.
My dizzyness and unsteadiness were so bad that even though my husband was assisting me to transfer from standing to sitting I somehow lost my legs and slipped past his hands and fell.
I was so anxious I took a lorazepam and they got me in my wheelchair (i was not even safe on my walker) and I finally felt calm enough when the lorazepam kicked in. But I remained unable to walk until around 3pm, needing assistance with getting on/off toilet (something I can normally do by myself with hand rails).
Is this within the range of a normal response to first dose? Or should I suspect it was caused or worsened by interactions with my clinical trial drug?
Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told there is a possible drug:drug interaction between amylyx and mexiletine and that they want me to start mexiletine at just once per day (150mg) first for a few week while they monitor me, then they will let me try going up to twice a day (total=300mg) with continued monitoring.
I was also told dizziness is a normal/expected side effect.
So I took my first dose of mexiletine this morning shortly after my morning amylyx and other AM meds. About 15 minutes later I became suddenly extremly dizzy and unsteady and my clonus kept going off all over my body (jaw, knees, ankles, wrist) though not each area at the same time (that would have been nuts).
I also became suddenly very sad and anxious and started crying from feelings of sadness. My husband and PCA (helper) were both present trying to assist me.
My dizzyness and unsteadiness were so bad that even though my husband was assisting me to transfer from standing to sitting I somehow lost my legs and slipped past his hands and fell.
I was so anxious I took a lorazepam and they got me in my wheelchair (i was not even safe on my walker) and I finally felt calm enough when the lorazepam kicked in. But I remained unable to walk until around 3pm, needing assistance with getting on/off toilet (something I can normally do by myself with hand rails).
Is this within the range of a normal response to first dose? Or should I suspect it was caused or worsened by interactions with my clinical trial drug?