Who is taking Ambroxol? Can you please share your experience so we can learn from you?
1 Side affects? How do you feel?
2 do you have your neurologists consent?
3 where do you acquire it from?
4 what other medications or therapies do you take?
There are other threads addressing Ambroxol but from what I’ve seen, only one PWP has shared their personal experience.
I bought it....have not taken it yet. Amazon, nothing from Neuro, and they have not heard of it, thyroid med, mucuna, (trying to start c/l - but afraid to, due to trying a 1/2 a tab of 25/100 CR and feeling extremely HIGH and OVER medicated lol), some vitamins and supplements,
Thyroid med? Silly question perhaps but for your thyroid or repurposed for PD. There are so many variations of cannabis. I hope you can find the right advocate to advise you.
here is a prior review on Ambroxol on this very same board from a patient in the first trial for PD in the UK completed and reported on with positive findings early last year (& well before I even knew about Ambroxol) to this similar question:
Is anyone taking Ambroxol? Please share
Andy_F
3 years ago
"Not any more, but I was a patient participant on the Royal Free Ambroxol drug trial. We are awaiting results of the study, an update is due in June. I should point out two things: Firstly that the trial was designed solely to determine if there is evidence for increased drug-related biochemical activity in the cerebro-spinal fluid and how this relates to drug-related blood serum activity levels, and secondly, the trial employed dosages of Ambroxol way above those used in the drug's current therapeutic usage range, currently this is about max 150mg/d, the trial dosage was almost 10x that. I don't have any further information to divulge, but if I could afford to, I would continue to take Ambroxol."
source:
healthunlocked.com/parkinso...
trial I believe he is referencing:
jamanetwork.com/journals/ja...
Awesome, thank you DHPSR!
Someone messaged me in response to my inquiry. I presume they want to stay anonymous since they messaged me instead on commenting. He is taking Ambroxol and has been for a couple months. He has had PD for multiple years and is still very physically active. He does not know if it is helping at this point but is not experiencing anything negative.
It may be that the longer you have had PD before starting Ambroxol, the longer it may take to observe a benefit from it cognitively and in slowing progression (it may be doing both, but how does one measure what they cannot experience happening - to the extent that those who have had PD for a longer time may report a decline &/or new symptoms more frequently, if the pace of those reports slow and one is remaining cognitively sharp, then that may point to Ambroxol. It may also be dose dependant, high or low, and how long you take it if your PD is more advanced, & if indeed you should ever stop taking it if you have PD. We will know more later next year when the current Ambroxol for PD dementia trial findings come out. In the meantime, given my 1 year experience with it, and as slowing and long term reversability are critical for me, I plan to stay the course. For me it is mitigating the risk of PD dementia that is the #1 objective, and why Ambroxol is so important to me:
"An estimated 50 to 80 percent of people with Parkinson’s will eventually experience Parkinson’s disease dementia. "
healthline.com/health/parki...
PS, you may find this application for Ambroxol even more fascinating than its COVID application:
Thank you for posting this. It looks very interesting. I have been wondering a while whether part of the problem for some people is that their glymphatic system is not working, affecting drainage from their brain. This might be exacerbated by the tendency to spend long hours at computers or looking at phones and tablets which puts the head and neck out of alignment. Perhaps this ambroxol by loosening mucus and making it runnier helps the drainage but I suspect it might work even better if people also concentrate on improving posture, reducing sitting time, and myofascial release so once the mucus is made runnier it can easily drain away.There is so much focus on chemical cures which for sure are necessary for some or most but I don’t think enough focus is put on the physical reasons why these proteins mis fold and clutter the brain. Could it be that there is a physical obstruction preventing them from getting away? And if they build up do they start to precipitate into clumps, and /or put the brain under pressure causing neurological symptoms.
Some of the supplements like mannitol and vinpocetine seem to do the same thing. Raising the head of the bed, movements like qigong and yoga, and even fast walking with swinging arms all seem to support lymph drainage and stretching myofascial tissue.
Could it be that some PWP might just initially have circulation problems of their lymph which create neurological problems, and medications with side effects add to the list of symptoms, each needing more medications.
Again these are just my rambling thoughts which might be totally wrong but it’s good to challenge the paradigm occasionally I think. I have no scientific papers to support this theory.
Here is a summary of 41 patients in the May 2021 American Journal 0f Hematology:
"Ambroxol hydrochloride is an oral mucolytic drug available over-the-counter for many years as cough medicine. In 2009 it was identified as a pharmacological chaperone for mutant glucocerebrosidase, albeit in a several-fold higher dose. Unfortunately, there have been no pharma-driven clinical trials to establish its use. Thus, real-world observational data are needed on the safety and efficacy of ambroxol for patients with Gaucher disease (GD) and GBA-Parkinson disease (GBA-PD). Clinicians treating patients with ambroxol for GD and GBA-PD were approached to collaborate in an investigator-initiated registry. Anonymized data were collected, including demographics, GD type, GD-specific therapy (when applicable), adverse events (AEs), and, when available, efficacy data. We report the data of the first 41 patients (25 females) at a median (range) age 17 (1.5–74) from 13 centers; 11 with GD type 1(four diagnosed with PD), 27 with neuronopathic GD (nGD), and three GBA mutation carriers with PD. The median (range) treatment period and maximum dose of ambroxol were 19 (1–76) months and 435 (75-1485) mg/day, respectively. One patient with type 2 GD died of her disease. No other severe AEs were reported. Twelve patients experienced AE, including minor bowel discomfort, cough, allergic reaction, mild proteinuria, dizziness and disease progression. Clinical benefits were reported in 25 patients, including stable or improved neurological status, increased physical activity, and reduced fatigue. Until the approval of specific therapies for nGD and disease-modification for GBA-PD, these preliminary data may be encouraging to physicians and patients who consider an off-label use of ambroxol."
Why consider Ambroxol for PD?
Ambroxol 
