Ambroxol, who has tried it?: Hi all, It... - Cure Parkinson's

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Ambroxol, who has tried it?

Ambroxol-Curious profile image
42 Replies

Hi all,

It seems there are trials on this existing drug, used as a cough medicine, to establish if it can be repurposed as an effective PD drug.

I'm interested to hear from people who have tried this/ are trying this and to hear your experiences.

Many thanks,

Tony

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Ambroxol-Curious
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42 Replies
limcheeese22 profile image
limcheeese22

Yes, tried for one year with full dose, no effect on me.

Doblady profile image
Doblady in reply tolimcheeese22

my husband has parkinism with lewey body and has been taking Ambroxol 75 g apsules twice a day for 12months his cognitive response improved and since dose has doubled he has improved imensly

CuriousMe12 profile image
CuriousMe12 in reply toDoblady

Hi Doblady Can I ask what brand and where you sourced your product from ?

acceptanceand profile image
acceptanceand in reply toDoblady

Hi Doblady, that is fantastic news. What symptoms do you think might have improved since starting with Ambroxol in addition to his cognition?

Doblady profile image
Doblady in reply toacceptanceand

I think I need to increase now because in last month he’s been having those vacant sessions so he’s taking longer to process what is being said to him . Brand is Mucosan

acceptanceand profile image
acceptanceand in reply toDoblady

Thanks Doblady, what does of Ambroxol has he been on recently?

M-o-ggy profile image
M-o-ggy in reply toDoblady

Would you be willing to share the brand you use ?

Ambroxol-Curious profile image
Ambroxol-Curious in reply toDoblady

Hi Doblady, how is your husband doing?

PEPSY2020 profile image
PEPSY2020 in reply tolimcheeese22

Hi

You say full dose

What it means?

Rose

limcheeese22 profile image
limcheeese22 in reply toPEPSY2020

clinical trials taking about 16 or 17 pill of 75 mg does per day

Journey4Health profile image
Journey4Health

I ordered it but haven’t tried yet.

PEPSY2020 profile image
PEPSY2020 in reply toJourney4Health

Hi

Ou l avez-vous commandé ?

Merci

Rose

LiesBram profile image
LiesBram

Im on it at the moment the max dose according to the trials phase 1, the safe doses is 1,2g/day

However the are I believe trials going on in phase 2 were the are up to 1,8g/day I am even up to 2,0g/d and no side effects.

I have no clear respons yet however I got the feeling that now after 4 months the my cognitive response improved I will at least take it for one year maybe (if no side effects) even longer

Im producing my own capsules and getting my ambroxol from India

acceptanceand profile image
acceptanceand in reply toLiesBram

Thank you for your response Lies Bram.

Did you say you are taking 2 g per day now?

Are you part of the trial or did you just decide yourself to try Ambroxol?

Tony

LiesBram profile image
LiesBram in reply toacceptanceand

yes I am on 2g/day No Im not part part of a trial

acceptanceand profile image
acceptanceand in reply toLiesBram

Thanks, what prompted you / persuaded you to try it?

LiesBram profile image
LiesBram in reply toacceptanceand

this Forum

acceptanceand profile image
acceptanceand in reply toLiesBram

Hi LiesBram, are you glad you are trying Ambroxol?

LiesBram profile image
LiesBram in reply toacceptanceand

yes

acceptanceand profile image
acceptanceand in reply toLiesBram

What would you say are the upsides of taking Ambroxol for you personally?

LiesBram profile image
LiesBram in reply toacceptanceand

this is different for any person I do not want to get peoples hopes up, simple said for me it seems to be doing something however I do believe you should try it for a longer period to get results, I just bought another 2 kg this should last me at least 3,5 years, my wife told me my motor skills are improving Im using 2g/day in the trials 1,2g/day is used which I tried also for half year, 0 effect

acceptanceand profile image
acceptanceand in reply toLiesBram

Are you on C/L?

LiesBram profile image
LiesBram in reply toacceptanceand

??

LiesBram profile image
LiesBram in reply toacceptanceand

Yes

PEPSY2020 profile image
PEPSY2020 in reply toLiesBram

Bonjour

Où avez-vous commandé car 2g par jour je n’ai rien trouvé

Le maximum est de 60 mg/comprime

Merci

Rose

MarkPrana profile image
MarkPrana in reply toLiesBram

Thank you LiesBram.

I was sourcing my Ambroxol from Germany but there appears to be a shortage of supply in Germany in the last 6 months, which has made it very difficult to obtain.

Are you able to advise where we can order a supply from in India?

Many thanks,

Mark

PEPSY2020 profile image
PEPSY2020 in reply toMarkPrana

Bonjour

À quel dosage existe il en Allemagne ?

Merci

Rose

LiesBram profile image
LiesBram in reply toMarkPrana

Im in the process of ordering 1 kg again if succesfull I can send you the details

LiesBram profile image
LiesBram in reply toLiesBram

send me a pm

PEPSY2020 profile image
PEPSY2020 in reply toLiesBram

Hi

Yes I would like to order it and when it’is possible for you to receive thé détails

Thanks

Rose

LiesBram profile image
LiesBram in reply toLiesBram

indiamart.com

LiesBram profile image
LiesBram in reply toMarkPrana

I just ordered 2kg

Josiedub profile image
Josiedub in reply toLiesBram

HOI BRAM zo te zien ben je Nederlands. kun je mij uitleggen hoe je besteld hebt?

LiesBram profile image
LiesBram in reply toMarkPrana

indiamart.com

PEPSY2020 profile image
PEPSY2020 in reply toLiesBram

Merci

PEPSY2020 profile image
PEPSY2020

STATUT

Complété

LES CONDITIONS

Maladie de Parkinson

INTERVENTION / TRAITEMENT

Médicament: Ambroxol

DESCRIPTION DÉTAILLÉE

L'étude AiM-PD recrutera 20 patients (10 GBA-positifs et 10 GBA-négatifs) diagnostiqués avec la maladie de Parkinson (MP). Chaque patient s'auto-administrera le médicament à l'étude, l'ambroxol (60 mg par comprimé) à 5 augmentations de doses intra-dosées sur une période de 6 mois, comme indiqué ci-dessous :

Jour 1 à 7 : 60 mg trois fois par jour

Jour 8-14 : 120 mg trois fois par jour

Jour 15-21 : 180 mg trois fois par jour

Jour 22-28 : 300 mg trois fois par jour

Jour 29-186 : 420 mg trois fois par jour

Le médicament à l'étude est autorisé dans l'UE en tant que médicament en vente libre pour traiter les affections respiratoires en réduisant la production de mucus. Des études antérieures ont montré que l'ambroxol peut pénétrer dans le cerveau chez des modèles de rongeurs et de primates non humains, et peut avoir un effet sur le ralentissement de la MP. Les résultats indiquent également que les individus qui expriment la mutation GBA (risque accru de MP) sont capables de réduire la croissance des cellules qui causent la MP en stimulant une enzyme appelée glucocérébrosidase.

L'étude recueillera des échantillons de liquide céphalo-rachidien, de sang et d'urine avant, pendant et après la prise du médicament sur une période de 6 mois. Dans ces échantillons, les enquêteurs mesureront les niveaux de médicament ambroxol, évalueront si l'enzyme glucocérébrosidase a été stimulée et les niveaux d'autres substances supposées être associées au développement de la MP et confirmeront si le médicament à l'étude a pénétré dans le liquide céphalo-rachidien et le SNC. L'étude administrera des évaluations cliniques et cognitives pour déterminer s'il y a une amélioration des symptômes de la MP du patient. Si l'étude prouve que l'ambroxol pénètre dans le SNC et reproduit nos découvertes actuelles en laboratoire, les enquêteurs passeront à un essai de médicament beaucoup plus vaste pour tester si le médicament à l'étude peut ralentir la progression de la MP.

TYPE D'ÉTUDE

Interventionnel

INSCRIPTION (RÉEL)

23

PHASE

Phase 2

Contacts et emplacements

Cette section fournit les coordonnées de ceux qui mènent l'étude et des informations sur le lieu où cette étude est menée.

Lieux d'étude

Royaume-Uni

London, Royaume-Uni

Leonard Wolfson Experimental Neurology Centre Clinical Research Facility

acceptanceand profile image
acceptanceand in reply toPEPSY2020

Thank you Pepsy2020

Translated version:

Status

Completed

THE CONDITIONS

Parkinson's disease

INTERVENTION / TREATMENT

Medication: Ambroxol

DETAILED DESCRIPTION

The AiM-PD study will recruit 20 patients (10 GBA-positive and 10 GBA-negative) diagnosed with Parkinson's disease (PM). Each patient will self-administer the study drug, ambroxol (60 mg per tablet) at 5 intra-dose dose increases over a period of 6 months, as indicated below:

Day 1 to 7: 60 mg three times a day

Day 8-14: 120 mg three times a day

Day 15-21: 180 mg three times a day

Day 22-28: 300 mg three times a day

Day 29-186: 420 mg three times a day

The study drug is authorised in the EU as an over-the-counter drug to treat respiratory diseases by reducing mucus production. Previous studies have shown that ambroxol can enter the brain in models of rodents and non-human primates, and can have an effect on the slowing of PM. The results also indicate that individuals who express the GBA mutation (increased risk of PM) are able to reduce the growth of cells that cause PM by stimulating an enzyme called glucocerebrosidase.

The study will collect samples of cerebrospinal fluid, blood and urine before, during and after taking the drug over a period of 6 months. In these samples, investigators will measure the levels of the drug ambroxol, assess whether the enzyme glucocerebrosidase has been stimulated and the levels of other substances suspected to be associated with the development of PM and confirm whether the study drug has entered the cerebrospinal fluid and CNS. The study will administer clinical and cognitive assessments to determine if there is an improvement in the patient's PM symptoms. If the study proves that ambroxol enters the CNS and reproduces our current laboratory findings, investigators will move to a much larger drug trial to test whether the drug under study can slow the progression of PM.

TYPE OF STUDY

Interventional

REGISTRATION (REAL)

23

Phase

Phase 2

Contacts and locations

This section provides the contact details of those conducting the study and information on where this study is conducted.

Places of study

United Kingdom

London, United Kingdom

Leonard Wolfson Experimental Neurology Centre Clinical Research Facility

Berylhorsey1 profile image
Berylhorsey1

there is a trial going on at Kings College Hospital in London I believe.

ZebraDoodle profile image
ZebraDoodle in reply toBerylhorsey1

Hi, do you mean this? Their recent newsletter (June 24) said:

"We are very excited for the launch of the phase III clinical trial ASPro-PD, which will investigate the repurposed cough medication Ambroxol. This study aims to assess the efficacy of ambroxol in slowing down the progression of PD and will be recruiting from a selection of participants with PD that have both the ‘normal’ wildtype GBA1 gene and the mutated GBA1 gene.

Due to delays with reformulating the drug, our previous issue announced that the start date of ASPro-PD would be pushed back. We are thrilled to share that the drug reformulation has been completed. Following this progress with drug development, the ASPro-PD Clinical Trial Unit, with help from the Cure Parkinson’s team and PD Frontline team, have been working hard to get all the necessary arrangements in place ready for recruitment to begin - which we now expect to be in the Autumn.

PD Frontline will be identifying participants that meet preliminary eligibility criteria based on age, disease duration and genetic results. These participants will be referred for a screening visit at a local NHS trial site, where full eligibility will be discussed and any questions about the trial can be answered. PD Frontline will be reaching out to potential participants in the weeks coming up to the start of the trial.

There are 15 potential research centres delivering the ASPro-PD study across the UK, with a target of 330 participants to be recruited over a period of two years.

...

Eligibility

GBA1 carrier / non-carrier

35- 75 y e a r s old

PD diagnosis within the last 7 years

No history of DBS

Further criteria"

Their website is:

pdfrontline.com/en

Zella23 profile image
Zella23

Both my husband and I are registered on PD Frontline and we both are taking part on their research programme and have been for the last 3 years.

My husband has PD I don’t but my mother had it. We ve both been genetically tested but are not carriers of the gene.

He wasn’t selected for the trial as he doesn’t carry the gene. He fitted all the criteria except that one. So it seems they are looking for strict criteria before they start the phase 3 trial.

Annaparkinson profile image
Annaparkinson

They use high doses of Ambroxol.Tried to start with 75 mgr x1 tabl but it made me ‘“cough “ so I stopped.

Husbandsupporter profile image
Husbandsupporter

I had read that Ambroxol is the best cough medicine for Parkinson's but not available in the US. Our son found a bottle for us in Germany and I've only tried it once. Nothing to report on it, but the Neurologist hadn't heard of it. Yet, I told him that's what I had found as best.

May I suggest the cough medicine Bronchial Wellness. It's all natural and has elderberry and honey in it already. My husband had a "chronic" cough and this cut it. You can get it online or maybe at your health food store. Very good and worth the cost for a bottle.

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