Ambroxol for PD

More on Ambroxol & COVID on LinkedIn below recently suggesting all should have some on hand. As for me, I continue to take mostly what the researchers call a low dose (600mg a day) of Ambroxol for my PD. At 10 months I can report my brain fog is still completely at bay, and I continue on a lower dose of Levadopa and Amantadine to control my other symptoms at 4 years since diagnosis (been off Requip for about 4 months, side effects ultimately were very bad for me). My neurologist thinks I am holding pretty steady - I’ll take that slowing any day.

“Bromhexine (which the body metabolizes to ambroxol) has been shown highly effective against COVID”.

https://www.linkedin.com/pulse/what-you-can-do-someone-know-gets-covid-19-infection-leibrand/

Hi DHP, hope you are well, how are you getting on with Ambroxol for your PD?

Dave.

thanks for asking Dave! Its been almost a year since I started taking Ambroxol, and my mental clarity remains excellent with no creep back of PD brain fog, which is huge for me (particularly given the longer term PD dementia risk). Most of that time I have been on 600mg a day (a low dose in the current trial underway), but I have tried 900mg for some periods, and still want to try 1,200mg (high dose) when I have the supply for it (trial results later next year should tell us something about the optimal dose requirement). As far as mobility issues, they have not worsened over that period (which my neurologist confirms), which suggests to me it does slow PD progression. I have experienced some motor improvements, like in my typing, facial gestures and much reduced freeze events, but I still am hoping for more significant improvements as time goes on. Just as it took years for me to develop PD, I have to believe it will take time for Ambroxol PD reversal benefits to be fully experienced. In fact recently I have begun to wonder if its long term use isn’t starting to payoff for me. We’ll see. What I can say is that it has enabled me to stay on a very low dose of Levedopa daily (1/2 of the low dose I have been prescribed). with no Ropinirole (Requip) needed for motor improvement and freeze reduction. To me that is also huge, as I don’t want to become more dependant on Levadopa, and Ropinirole side effects were very, very bad for me. Quite honestly, I truly believe that were it not for Ambroxol, my life would be going down a much darker road, and instead I have chance to hold on (or more) until something perhaps even better comes along (if it even needs to). One thing I will say is that I started taking Ambroxol fairly early after my PD diagnosis (within a few years), and it may be important when you start just how much it can do for you longer term, but I do think is can really help mental clarity no matter when you start it based on my experience and other anecdotal feedback. Thank again for asking, and hope you are doing well also!

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Hi DHP,
I am not too bad thank you. Thanks for your detailed reply. I am very interested in Ambroxol, at least as an add-on. It is a shame there has been no phase 3 trial yet because until there is it will not be generally prescribed. So yet again patients are left to self experiment.
Where have you been sourcing your Ambroxol from? I notice there are quite a few places when I Google.
Regards,
Dave.

glad your’e doing ok. With regard to Ambroxol source, best to just search on it, can’t say more without breaking forum rules.

given my cognitive benefits continue, very positive on the results of the Ambroxol for PD dementia trial ending this year with findings to be published in 2022:

https://www.centerwatch.com/clinical-trials/listings/168579/parkinsons-disease-dementia-ambroxol-as-treatment-parkinsons/

beyond that, it appears there is a similarly focused Norwegian trial in the planning stages as well:
https://alz-journals.onlinelibrary.wiley.com/doi/abs/10.1002/alz.042589

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fascinating case study on Ambroxol reported last year on a patient with Gaucher’s disease (important finding as there is a relationship between GBA1 mutations, Gaucher disease and Parkinson disease)

Case Study: Ambroxol Reverses Bone Damage, Decreases Abnormal Organ Volume in GD Type 1
https://gaucherdiseasenews.com/2020/01/02/ambroxol-reverses-bone-damage-decreases-abnormal-organ-volume-gd-type-1-case-study/

Is Autophagic-Lysosomal Dysfunction the Parkinson’s-Gaucher Link?
https://www.gaucherdisease.org/blog/the-links-between-gaucher-disease-and-parkinsons-disease-podcast-recap/

Interesting new research finding on Ambroxol for COVID from the April 23rd issue of the Journal of Biological Chemistry.:

"Ambroxol is a safe drug that has been used clinically since 1979, at least in Germany. It has almost no side effects. In addition, inhalation is a very safe method of treatment in general very often avoiding systemic side effects. Thus, our data justify further studies to investigate whether ambroxol can be clinically used to prevent or treat infections with SARS-CoV-2."

Hi @DHP
Just wanted to say how much I appreciate all the time and effort you have put into the Ambroxol issue and sharing that on this forum. Since starting on a low dose a couple of weeks ago, I am sure there is a noticeable difference in my husband ‘s functioning already…mostly his clarity of thought and speech. A long long way to go , but if it were not happening I would not be so surprised/ Shocked/delighted when it does. My only concern at the moment is the cost of the significant dosage that he will eventually be on, but in a way it is the least of our issues and if taking Ambroxol means thàt he has a better quality of life then it is worth every penny.
Best wishes, Pippa

so glad for him, great to hear about his improvements in clarity, exactly what Ambroxol did for me first (& still does!), many thanks for the follow-up note!

I have been taking Ambroxol since October last year,building up to 600 mg per day.
I am of course pleased if it is having a positive affect for others, but I have to honest and say that it doesn’t seem to be working for me.
How do you prove any slowing of progression because it is impossible to know how things would have changed without the Ambroxol?
Anyway good old PD definitely seems to be winning at the moment!
Do I increase the dosage or do I concede? A decision to be made…
Sorry to sound so negative but it’s been one of those days.

DHP, thanks for your comments.h

DHP, my fingers have a mind of their own today! Having a more positive day and I agree with what you say about persevering.
In the absence of a more promising, available alternative and being in the fortunate position of being able to afford it, I’ve decided to up the dose and carry on.
I was only diagnosed in September last year and have managed so far to escape brain fog and freezing, so hopefully the Ambroxol will help keep it that way.

exactly the idea, only in my case I did not start until 3 years after diagnosis, & wish I had in year 1.

Love to know more about the Chinese herbs you are using and alternative treatments.

Dave, would you comment as to why you have not increased Ambroxol uptake to 1.26mg/day as per trial study…Would it be that you have seen no improvement in functionality etc on 900mg/ day? If anyone else is trialing Ambroxol, without cocktails of alternative medicines…and have seen irrefutable improvement, please share. I have reduced Ambroxol intake to a trickle, partly through failing to find other people singing its praise…on top of noticing myself that my condition was worsening despite taking 600mg/day Ambroxol for circa 4 months

Hi Pippa, just checking in, hope all is well with you and your husband’s mental clarity is still improved. Best regards.

Hi DHP,

To be honest I am not sure…my sense is that it has but his condition is so variable from day to day and all his other meds have so many side effects (about to be reviewed and hopefully reduced) that it feels a little like a battleground in his body between warring drugs.

I have been wondering what made you decide to stop at 600mg per day? Will be speaking to the neurologist about it but am feeling rather pessimistic about the possibility of any significant improvements, but maybe it takes longer than I hoped and over time things will change for the better. It has only been about 6 weeks so far of a steadily increasing dose - now at same as you.
regards,
Pippa

Keen to find out more. I would need to drop azilect though.

Would recommend starting your due diligence with the two trials of Ambroxol for PD, one completed with findings published early last year and one in progress completing at the end of this year, links below.

https://jamanetwork.com/journals/jamaneurology/fullarticle/2758317

https://www.centerwatch.com/clinical-trials/listings/168579/parkinsons-disease-dementia-ambroxol-as-treatment-parkinsons/

https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-019-1252-3