maryna
New member
- Joined
- Aug 17, 2024
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 06/2024
- Country
- UK
- State
- NY
- City
- Swansea
Hello,
I am a newbie here. My husband was diagnosed with ALS limb onset in June 2024. He had a rapid progression to the point that I thought he would die in August. Extreme SOB, respiratory rate went persistently to 40. Unable to move from a toilet to a wheelchair.
I have received Ibudilast from Japan and overnight he moved from 8 pillows and a wedge pillow to one pillow. I don't know whether it was a sudden overnight remission or it was a response to Ibudilast. The drug is a free radical scavenger, a small molecule penetrating BBB, works in a different pathway to Radicava ( Edavarone in the UK), it is licensed for ALS treatment in Japan and South Korea. I have read a lot about it and don't have any qualms for using it.
However, my question is whether have anyone of you tried Ambroxol? Again, it is a small molecule, derived from an Indian herb, penetrating BBB and is changing lipid metabolism in motor neurones. The question is out of curiosity. There is a trial conducting currently in Australia, the doses are high.
I am a newbie here. My husband was diagnosed with ALS limb onset in June 2024. He had a rapid progression to the point that I thought he would die in August. Extreme SOB, respiratory rate went persistently to 40. Unable to move from a toilet to a wheelchair.
I have received Ibudilast from Japan and overnight he moved from 8 pillows and a wedge pillow to one pillow. I don't know whether it was a sudden overnight remission or it was a response to Ibudilast. The drug is a free radical scavenger, a small molecule penetrating BBB, works in a different pathway to Radicava ( Edavarone in the UK), it is licensed for ALS treatment in Japan and South Korea. I have read a lot about it and don't have any qualms for using it.
However, my question is whether have anyone of you tried Ambroxol? Again, it is a small molecule, derived from an Indian herb, penetrating BBB and is changing lipid metabolism in motor neurones. The question is out of curiosity. There is a trial conducting currently in Australia, the doses are high.
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