Anyone else taking ambroxol?

[Stoxy]

Hello. My husband has started taking Ambroxol - 240mg per day (4 x 60mg) -from mid dec last year- and has said he said he feels a bit better in his movement- more able to turn over in bed - easier to move about. It’s not drastic but says it’s noticeable. Is anyone else trying Ambroxol?

[gaga1958]

I think Ambroxol is a cough syrup, is that accurate? Is it a prescription? Did he receive from his PD Dr or a functional type Dr? Are you familiar with the mechanism of how it causes improvement?

I hope it continues to improve your husband

Please keep posting updates

[Stoxy in reply to gaga1958]

hello. I think that post is what prompted him to take it. He just ordered it from the internet and hoped for the best- not very scientific I know!

[gaga1958 in reply to Stoxy]

I'm in the states so unfortunately it is not available here or i would take it too. the rules don't make any sense here. I wonder when the studies from UK and Netherlands will be delivered? it sounds promising.

[Stoxy in reply to gaga1958]

Yes I think the dose on the study is 1000mg so he’s only taking a quarter of that. Everything takes soooo long to go through any clinical trials - sometimes you’ve just got to give something a go. And as it’s already approved and doesn’t seem particularly harmful - he thought he’d give it a go. Might only be placebo effect- we will just have to see how it goes. All the best x

[Boscoejean in reply to gaga1958]

"The Food and Drug Administration (FDA) has not approved ambroxol for use in the United States because it has not granted reciprocal recognition to generic medications approved by the European Medicines Agency (EMA). Drug companies would need to conduct expensive clinical trials to get FDA approval for ambroxol, but it's a generic drug and not worth the cost.

Ambroxol is an expectorant that helps loosen mucus in the lungs. It's been used as a safe and effective over-the-counter cough medicine in more than 50 countries for over 30 years. However, some US consumers have gained access to ambroxol illegally and used it to treat children with coughs and colds. The FDA has identified websites that illegally market ambroxol and provide dosing information for children under two years old"

[gaga1958 in reply to Boscoejean]

I don't understand why it would need trials when its already been used for 30 years safely. Why can't they approve it on the fact that many other countries use it and have safely for yrs? It's in tons of countries.

[CaseyInsights in reply to gaga1958]

The dosage for PD is quite high. There is no ‘30 year data’ on such a high daily dose - 1,200 mg. Quite frustrating but understandable 🌺

[shaken-not-stirred in reply to CaseyInsights]

No 240 mg not 1200 mg.

[CaseyInsights in reply to shaken-not-stirred]

Here is a trial:

Ambroxol for the Treatment of Patients With Parkinson Disease With and Without Glucocerebrosidase Gene Mutations

Interventions : An escalating dose of oral ambroxol to 1.26 g per day.

jamanetwork.com/journals/ja...

🌺

[PHILCAM in reply to Boscoejean]

However, some US consumers have gained access to ambroxol illegally?

Illegal? Please explain You can get Ambroxol over the counter

[Boscoejean in reply to PHILCAM]

so have you been able to get this at a pharmacy in the US?

[PHILCAM in reply to Boscoejean]

Don't need a pharmacy

Do you have Amazon?

amazon.com/AMBROSAN-Cough-R...

[PHILCAM in reply to PHILCAM]

I just checked Amazon - it is no longer available - wierd - hmmm?

BUT ---- here is some INFO about the use of ambroxol and PD

==============================================

Ambroxol hydrochloride, commonly used as a mucolytic agent to break down mucus, has shown promise in treating Parkinson's Disease (PD). Research suggests that Ambroxol may help improve the function of the glucocerebrosidase (GBA1) gene, which is often mutated in PD patients1. This gene mutation can lead to the build-up of alpha-synuclein protein clumps, known as Lewy bodies, which are a hallmark of PD.

A phase 2a study demonstrated that Ambroxol could cross the blood-brain barrier, bind to the mutated GBA1 protein, and increase healthy levels of alpha-synuclein in the spinal fluid. This indicates that Ambroxol might slow the progression of PD by preventing the formation of Lewy bodies1.

Currently, a large-scale phase 3 clinical trial called ASPro-PD is underway to further investigate Ambroxol's potential to slow PD progression. This trial involves 330 participants across multiple clinical centers in the UK and is funded by Cure Parkinson's, Van Andel Institute, and the John Black Charitable Foundation2.

It's an exciting development in the search for new treatments for Parkinson's Disease! Do you have any specific questions about Ambroxol or its use in PD?

[barrie1757 in reply to PHILCAM]

This is only 30 mg per dose. The dose foor Parkinson’s is much higher.

[PHILCAM in reply to barrie1757]

The dosage of Ambroxol for Parkinson's disease (PD) is still being studied in clinical trials, and there isn't a standardized dosage established yet.

Early-phase clinical trials have shown promising results with doses ranging from 100 mg to 600 mg per day, divided into two or three doses.

So each box of Ambrosan is 100 tablets - so I guess start with 3 to 4 tablets during the day - 90 to 120 mg -

If the dosage is 600 mg - then you would take 20 tablets a day 🤪 -

There has got to be a better way - !

[gaga1958]

I just saw this post. You might want to look it up. There were 52 replies to it. Look it up by the author TL500

————

Ambroxol cough suppressant repurposed for slow down progression or hopefully stop PD

TL500 profile image

TL500

1 month ago

•

52 Replies

[limcheeese22]

yes,

stopped have been taking for a year or so, 12xx mg per day, no noticeable effect

[LAJ12345]

my husband took 2x30 mg night and day as per instructions on pack for about a year but it is much lower than study. It had no effect at that dose.

[Baron1]

Good Afternoon,

I gave my mother just over 600mg tablets seven days a week, which was half of the full dose in the trials of 1,200mg.

After three months I noticed no difference and she did not feel any better or worse.

Also because it does affect the kidneys, I stopped as a precaution to not aggravate the kidneys by continuing.

If you want to make sure your husband is not experiencing a placebo effect, you can ask your doctor to have a test done to check the alpha synuclein levels in the CSF. However, it is invasive, as it requires puncturing the spine to draw fluid out to have it checked by a laboratory.

It is a big effort, but is the only way to truly see if it is having any difference.

Best wishes and I hope he improves regardless.

[parjinyu0725]

Hi Stoxy, Ambroxol is being repurposed to potentially treat genetic mutations in the GBA1 gene, which codes for the enzyme glucocerebrosidase, as these mutations are a significant risk factor for developing Parkinson's disease; essentially, Ambroxol aims to improve the function of this enzyme when mutated, potentially slowing disease progression.

Key points about ambroxol and GBA1 mutations:

Mechanism:

Ambroxol acts as a "molecular chaperone" by stabilizing the mutant glucocerebrosidase enzyme, allowing it to function better.

Disease connection:

Mutations in GBA1 are linked to a build-up of a substance called glucosylceramide, which can contribute to the development of Parkinson's disease symptoms.

Potential benefit:

By enhancing glucocerebrosidase activity, ambroxol may help clear this buildup and potentially slow the progression of Parkinson's disease, particularly in individuals with GBA1 mutations. From AI Overview

[PHILCAM]

Check out the following site - results of a study

parkinson.org/blog/science-...

[amykp in reply to PHILCAM]

I've been taking it on and off for years. It is not illegal to TAKE, or to import, it is just illegal to SELL.

I take 1000mg once a day. I ordered the powder in bulk from India, and I make my own capsules...otherwise, it is a huge pain in the neck.

BTW, I have a GBA mutation, otherwise I don't think I'd bother. Also, as far as I understand, it's not going to cure anything--it's just (maybe) going to slow or stop progression. That's nearly impossible to measure on a day-to-day basis.

[PHILCAM in reply to amykp]

I wonder why it was selling on Amazon - but it is not available now anyway

ALSO - I don't think there is anything currently that is considered a cure for PD

For me, I consider a win if we can slow it or stop the progression

[Natajo]

Hi everyone,

I’m writing from France where you can get Ambroxol from your next door pharmacist.

About a year ago I was appalled at how fast my dear friend was going downhill.

As a result I started to screen the research.

I found out Ambroxol was a possibility. He started to take it on a low dose and we gradually increased up to 1200mg a day. However, I must say he is not fully serious with it so he may take half dose only on a daily base.

When he started taking it, he was starting to to show a slight cognitive decline. I got a clear impression that he got positive signs of improvement when he reached a certain level of dosage.

However, himself was not impressed with the results.

I do not see things the same way as I am fighting to maintain his independence. I believe that even a slowing down in disease progression is positive and that we are buying time !

I later added red light therapy which brought another inch of improvement.

Last week. he also started vibrotactile gloves therapy.

It’s a little early to speak since he only took about 5 sessions of two hours but it seems we might yet need to decrease his medication.

He is under apokinon pump plus sinemet (8 tabs a day).

I will keep you updated since this is really too soon to be boasting around.

Anyways, to return to the main topic of the day, I believe that Ambroxol is interesting because, so far, it is one of the only possibility to treat the disease at its core. So I won’t let down till the end of the trial.

In my mind, all these things are complementary in the fight against PD.

Best wishes to all of you !

N’