Cough syrup drug being trialed as Parkins... - Cure Parkinson's

Cure Parkinson's

19,292 members20,135 posts

Cough syrup drug being trialed as Parkinson’s treatment

JayPwP profile image

neurosciencenews.com/parkin...

Ambroxol, a medication approved to treat coughs, may slow the progression of Parkinson’s disease. The medication is able to effectively cross the blood-brain barrier and increases levels of GCase in patients’ brains. Ambroxol also appears to reduce Parkinson’s-related alpha-synuclein levels.

74 Replies

You may find this in depth dive to be of interest

scienceofparkinsons.com/202...

🌺

JayPwP profile image
JayPwP in reply to CaseyInsights

Thanks. So we wait for phase 3 results?

This has been previously on this site. General site search:

google.com/search?hl=en&as_...

A couple of recent posts:

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

Notes:

Dosage is very high

[edited]:

This treatment is best for a particular mutation causing PD but does help with PD in general.

JayPwP profile image
JayPwP in reply to park_bear

Thanks. As per link shared by Casey above, Ambroxol benefitted mutation as well as non mutation patients.

Also the high doses in the trial may be to identify the highest tolerable dose.

Despe profile image
Despe in reply to JayPwP

Yes, you are right. Ambroxol is beneficial for all PwP not just for a particular mutation.

JayPwP profile image
JayPwP in reply to Despe

Thanks

Interesting video here with some very early feedback from Canadian trial:

touchneurology.com/parkinso...

I have been taking Ambroxol for almost a year now at a 600mg a day level, and I can tell you for a fact it has slowed the progression of my PD (my neurologist has observed this as well). I have restored and retained excellent mental clarity, with none of the brain fog that used to so torture me, and have had some significant motor improvements and much, much reduced freezing Inot to mention reduced shoulder nerve pain). It has given me hope that I can absolutely hold off the worsening of my PD. I currently source it on Amazon, but there are other places you can find it as well. If any of you have any questions, or want more detail on how it has helped me over the past year, I'd be happy to answer any questions you may have.

CaseyInsights profile image
CaseyInsights in reply to DHPSR

Really now 😢🧐😢

DHPSR profile image
DHPSR in reply to CaseyInsights

really, any Qs for me?

CaseyInsights profile image
CaseyInsights in reply to DHPSR

No questions my friend, I just remain skeptical.

At 600mg per day which you admit to taking - a low dose - with 30mg tablets, we are looking at 20 tablets a day for Ambroxol alone 🤯

healthunlocked.com/parkinso...

Thanks but no thanks 🙅

DHPSR profile image
DHPSR in reply to CaseyInsights

Correct, 20 tabs a day. All I can say is at the moment, Ambroxol is the only thing standing between me and continued cognitive decline, which is worth everything to me and my family. Given its safety profile, even at a high dose, and low cost as its not covered by insurance, and how effective it is for me, there is just no way I'm taking the risk of further mental decline. I've seen firsthand how that ends.

CaseyInsights profile image
CaseyInsights in reply to DHPSR

So be it. You seem to think there are no other options. So may I suggest the following rather inexpensive option -

Reducing oxidative stress and inflammation to slow Parkinson's disease

Paper & Discussion Here - ✨🏋🏽‍♀️✨

healthunlocked.com/parkinso...

DHPSR profile image
DHPSR in reply to CaseyInsights

absolutely agree that reducing oxidative stress on the brain is also critical for us with PD, and there are different foods and derivatives that can help do that. In that vein, I also take Acetyl L Carnitine, and have been for maybe 15+ years now, to reduce oxidative stress and boost brain function (link below). That supplement has given me a mental edge for years with my peers, significantly helping my memory and thought processes (and I believe is also mitigating my ALZ risk as well). I take 1000mg a day. But that still did not prevent brain fog from enveloping my mind as my PD condition worsened, only Ambroxol has been able to do that.

psychologytoday.com/us/blog...

CaseyInsights profile image
CaseyInsights in reply to DHPSR

So nice we could agree on something, as I too take 800mg Acetyl L- Carnitine per day 🌺

But I will not be persuaded to follow in your footsteps.

Ambroxol is a drug - with all the downside that word carries. So until the regulators give their approval as to its effectiveness, its high usage level and a time period for use in Parkinson’s, I am staying clear

✨🙅✨

I take Carnitine as well but I was not aware to take such a high dose. Would you mind sharing info as to why 800mg?

I have not given dosage here much thought: the instructions for this high end supplier say one per day 🌹

amazon.com/Designs-Health-L...

jackhammersbro profile image
jackhammersbro in reply to DHPSR

how long did you take it b4 you noticed a positive effect

DHPSR profile image
DHPSR in reply to jackhammersbro

sometime in the 2nd month when I reached my highest dose level, which for me is normally 300mg 2x day (the trial escalation protocol starts very low, so it takes a month to get to a high dose while you adjust and watch for any rare side effects beyond some initial stomach upset), I started to observe my brain fog clearing, and not long after that a reduction in my freezing episodes, with some other positive observations in the months following that are continuing as well at 14 months.

chartist profile image
chartist in reply to DHPSR

DHPSR,

Since you offered, I have questions!

1a. What stage of PD are you currently at?

1b. What year were you diagnosed?

2. How long did it take you to notice a benefit from Ambroxol?

3. Did all of the benefit occur at the same time or did it occur slowly over a period of time?

4. Is the benefit continuous or does it wane between doses?

5. Have you experimented with the dose?

6. Does it affect you digestive system in anyway?

7. What else are you taking in terms of meds and supplements?

8. Have you noticed any side effects as digestive tract issues seem to be the most common side effects such as nausea, vomiting, heartburn, dysguesia, diarrhea, dyspepsia and dry mouth?

9. Do you take it with food or without food?

10. What other details can you share?

Thank You!

Art

DHPSR profile image
DHPSR in reply to chartist

1s/ stage 2

1b/ 4 years ago, started taking Ambroxol in Feb 2020 after 1st trial findings published

2/ within 1-2 mo's it cleared my brain fog, & my freeze ups also started declining

3/ motor improvements I started noticing at about 3 mo's, & I'm still noticing them

4/ continuous daily, not like Carbadopa/Levadopa, just try not to miss a day or two

5/ yes, I have tried 900mg, but not long enough to notice if it helped me more

6/ slight stomach upset in the 1st week or so, but after that no side effects in 11 mo's

7/ Carbadopa/Levadopa low dose (3 tabs daily), Amantadine, Rasagaline

* have eliminated Ropinirole (bad side effects for me) post-Ambroxol with motor still ok

8/ just stomach upset at first noted in 6; somewhat harsh taste, recommend chocolate

9/ usually with food, sometimes without, doesn't matter as much Levadopa

10/ well, the cognitive benefit for me is enormous, I cannot understate it, & if it slowing my progression cognitively as I think it is, then my PD dementia risk mitigation is huge.

PS, my grandmother (mother's side), died from the effects of PD over a number of years while I observed as a kid as she fell into extreme dementia and became totally bedridden and physically crippled, and my mom died from the effects of dementia -this risk is very real & personal for me, so I am not one to overstate Ambroxol's benefit in this regard.

If you have more Qs, will answer as I can. Thanks for asking them!

chartist profile image
chartist in reply to DHPSR

DHPSR,

Thank you very much for your excellent answers to the 10 questions I asked! If I or anyone else thinks of other questions they would like to ask you regarding your excellent results with Ambroxol, we will post them. Thank you again!

Art

cclemonade profile image
cclemonade in reply to DHPSR

I have similar familial dementia history. Do you know how the Ambroxol affects your gut microbiome? I have not found info on that aspect of it. Do you use mannitol as well? Nicotine? Are you on a special diet? (I'm doing the Dr. Dale Bredeson diet) Citicoline or Tourine or anything else that could duplicate the affect being attributed to the Ambroxol? Thank you!

DHPSR profile image
DHPSR in reply to cclemonade

Have not seen any research or any negative side effects on how Ambroxol impacts the gut microbiome, nor have I had any negative stomach experience with it myself after the first week or so (mild stomach upset). No I don't take mannitol, nicotine, citicoline or tourine (I really don't think there is any other molecule quite like Ambroxol), and I'm not on any special diet. In the past couple of months I have been taking a probiotic periodically to gauge the impact on my vagus nerve, given the research on its link to PD, but too soon to say much on that at this point. I have been taking Ambroxol for almost a year, that I can say a lot about.

cclemonade profile image
cclemonade in reply to DHPSR

I am so appreciative of your answering all of these questions and sharing all of this info. 20 pills is a lot to have to get down. That must be rather hard. I take a lot of supplements and some days it’s a struggle.

I believe you mentioned your neuro is on board with this. I am having a hard time finding the right neuro. I wonder if yours would take a patient out of their area.

DHPSR profile image
DHPSR in reply to cclemonade

I take a number of supplements as well, some days more than others. I can ask my neurologist if he takes remote patients if you like, what state are you in? If you want, you can send me a private message.

JayPwP profile image
JayPwP in reply to DHPSR

Is this Ambroxol HCL or some other variant?

DHPSR profile image
DHPSR in reply to JayPwP

correct, simple Ambroxol HCL (hydrochloride), a 50 year old tried and tested cough medicine, only at a higher dose.

cclemonade profile image
cclemonade in reply to DHPSR

Thank you for sharing this! Sometimes negative feedback can leave us feeling hesitant to share our experiences. I am very grateful you are sharing your experience.

DHPSR profile image
DHPSR in reply to cclemonade

What makes it compelling to try something now that could work to slow PD progresssion like Ambroxol, as opposed to a year or more from now, is this statement from a team of scientists:

"...it is not known when during the natural history of PD the first intracerebral α‐synuclein pathology appears and whether there is a “point of no return” beyond which the damage to the neural systems affected by synucleinopathy can no longer be protected or revived, even with the most effective therapies. As mentioned earlier, it is currently believed that α‐synuclein pathology begins to develop during the PD prodrome, and by the time motor symptoms have appeared the aggregates are widespread in the brain."

movementdisorders.onlinelib...

In my view then, for those with PD there is literally no time to waste.

CaseyInsights profile image
CaseyInsights in reply to DHPSR

So you are still actively encouraging others “to try something now that could work to slow PD progresssion like Ambroxol”, even though Ambroxol is a drug - with all the downside that word *drug* carries.

Drugs are very powerful molecules and we should be sufficiently patient in awaiting regulatory approval, for use.

It is pass reckless to continue to promote this: I sincerely hope no one is so foolish as to walk in your footsteps. 🧐

But it’s not just a random new drug. It is a drug with a long history of use.

Do talk to your neurologist: it is a repurposed drug. The original evaluation did not anticipate such heavy usage.

And tell me how long would you need to take this treatment

✨🕊✨

DHPSR profile image
DHPSR in reply to CaseyInsights

I totally agree drugs can be very powerful molecules, and I would hope so! I would absolutely recommend to anyone thinking of taking Ambroxol that they should do their own due diligence on it and discuss it with their neurologist before doing so. I did both; in fact I have discussed it with 2 neurologists, and they are both fine with it. As far its safety profile, as an almost 50 year old over-the-counter approved cough medicine in Europe, the information below should get those interested started in their own due diligence:

"Ambroxol has an excellent safety record and has been studied in > 15,000 patients in more than 100 trials. While the normal expectorant dose in adults is in the range of 75–100 mg/day, doses of 1000 mg IV are used in pregnant women experiencing premature delivery to aid fetal lung maturation, and doses of 30 mg/kg in neonates for fetal respiratory distress syndrome"

bmcneurol.biomedcentral.com...

The question I asked myself in my own due diligence of Ambroxol was what was the potential price of waiting another 2 years or more - in terms of my progression and the potential reversability of it - before all the additional research results were in and it was approved for a PD indication at a higher dose In my own case, I decided that given its safety record and the positive findings that have already been published last year in an early trial, that I was unwilling to pay the potential faster progression price of waiting. I am one year on it now, and very glad I did not wait based on my experience with it to-date. But again, anyone considering should do their own due diligence, and make their own decision in consultation with their neurologist.

CaseyInsights profile image
CaseyInsights in reply to DHPSR

This conversation is over my friend 📌

cclemonade profile image
cclemonade in reply to DHPSR

Yipes. I’m very conflicted about how to proceed. I think that “should have, could have, wish I did” is more likely than making matters worse by a drug that has been used for decades. But, drugs are scary business. I wish I had access to your neurologist. Can you please share who you go to?

JayPwP profile image
JayPwP in reply to cclemonade

I would rather try now than regret later. Even Levodopa is a drug, so is paracetamol so to speak

cclemonade profile image
cclemonade in reply to JayPwP

Are you trying it?

JayPwP profile image
JayPwP in reply to cclemonade

I am trying to source an Ambroxol 100+ mg tablets. If I dont find higher strengths, will order the 30 mg Ambroxol HCL.

JayPwP profile image
JayPwP in reply to JayPwP

Found 75mg tablets, which means 8 tablets to reach 600mg per day

mucolite-75-mg-capsule-sr

JayPwP profile image
JayPwP in reply to JayPwP

As per the below article, 20% Parkinson's cases are GBA genetic

cureparkinsons.org.uk/2019/...

"Small variations in DNA are associated with approximately 1 in 5 of Parkinson’s cases."

JayPwP profile image
JayPwP in reply to JayPwP

Ambroxol HCL 75mg SR is sustained release capsule.

DHPSR Has it made any difference to motor functions like Bradykinesia? How did you arrive at 600 mg threshold??

DHPSR profile image
DHPSR in reply to JayPwP

600mg slightly more than the 520mg low dose being tested in the current Ambroxol trial for PD dementia,

bmcneurol.biomedcentral.com...

and slightly less than 1/2 the higher 1,260mg dose used in the completed trial,

jamanetwork.com/journals/ja...

and easy to remember to take one blister pack of ten 30mg tabs 2x per day

Have seen some small motor function benefits such as in typing and facial, most measurable benefit has been cognitive - no return of brain fog & reduced freezing - and to the extent that my symptoms have not materially worsened in the past year and my meds are reduced, for me at least that suggests a slowing of my progression.

JayPwP profile image
JayPwP in reply to DHPSR

Thanks

JayPwP profile image
JayPwP in reply to DHPSR

Last week I was on 1 capsule of 75 mg in the morning. Added 1 more in the PM from today. Total 150 mg per day.

cclemonade profile image
cclemonade in reply to DHPSR

Hello, I am rereading your Ambroxol experience. I really want to do it.

I thought there was another study but I can only find the results from 2020. Do you know what is currently happening?

DHPSR profile image
DHPSR in reply to cclemonade

yes, the Ambroxol trial for PD dementia ends this year (link below), it has been going on for some time now. Based on my experience and the fact that the trial was not ended early, I expect positive findings published sometime next year, meanwhile I will not have lost another year in my progression waiting for them.

EXCERPT FROM THE LINK:

"This proposal outlines a completely novel pharmacological target for PDD, namely the enzyme GCase. It also proposes a completely novel therapy using the drug Ambroxol, an agent considered safe enough to give to pregnant women, which has improved GCase function in pilot studies in humans. This strategy could stop or reverse the underlying pathology of PD; it might allow patients to get better."

centerwatch.com/clinical-tr...

PS, there is also a Norwegian trial starting up soon with a similar objective, adding further support to my positive expectation.

alz-journals.onlinelibrary....

MissRita profile image
MissRita in reply to DHPSR

Is it only available in the UK? Or is it available in the US?

DHPSR profile image
DHPSR in reply to MissRita

It is available in the US on Amazon currently.

whatadrama123 profile image
whatadrama123 in reply to DHPSR

we are in nz. ordered ambrixol on amazon. about $6 per day .arrived in 4 days. HWP 67 yrs old taken for 3 days. brain fog much improved. will monitor on going.

some worry about taking repurposed drug. but sinemet has side effects as do all drugs. Parkinsons is a bugger to live with and specialists dont really know how to treat ....trial and error it seems.

when trials finish hope it will be approved and then will have a head start on positive effects.

thanks DHPSR

DHPSR profile image
DHPSR in reply to whatadrama123

glad it's working for you to clear PD brain fog as it does for me, fully expect good news on current trial next year sometime, may take a little longer then for medical community to push for PD use without large drug company support, but in the meantime its an action we can take now.

JayPwP profile image
JayPwP in reply to whatadrama123

What is your dosage?

Fighttolive profile image
Fighttolive in reply to DHPSR

Wondering if sustained release have the same effect.

Image of amroxol sr
JayPwP profile image
JayPwP in reply to Fighttolive

I think so

Turnipbarrow profile image
Turnipbarrow in reply to JayPwP

Have you determined if the sustained release is working?

My husband already takes 16 pills from restore gold plus other supplements. Would love fir him to try this but the number of pills will be prohibitive!

JayPwP profile image
JayPwP in reply to Turnipbarrow

This is a GCase benefitting drug, resulting in a-syn expellation from the brain.

However there are no a-syn testing available near me to determine effectiveness.

Physically I don't feel any improvement but I haven't reached the 600mg per day dose. The trial was at 1300mg per day.

Fighttolive profile image
Fighttolive in reply to JayPwP

Got my supply recently and trying to work up to 600mg per day. Jay are youbtherevyet? Do you break it up like 300mg in the morning and 300 in the evening or all at once. Any impacts on tremors? My cl dosage has gone up to 1750mg per 24hr. Can't get more than 3hr relief at a time.... sometimes less since it takes about 30mins on an empty stomach. Hoping it clears my brain fog as noted here and prevents pdd.

JayPwP profile image
JayPwP in reply to Fighttolive

No. I stopped in between. Have started again. Reaching 120mg today. I don't have tremors and I am non responsive to C/L

That’s excellent. Sounds like it’s working for you.How strong are your regular meds - 3 tablets of 100mg or 200mg l-dopa?

Do you have to take 20 cough medicine tablets a day of have you found stronger stuff?

DHPSR profile image
DHPSR in reply to Astra7

3 tabs of 100mg Carbidopa/Levodopa.

20 tabs of the regular Ambroxol 30mg cough medicine form - 10 in the AM, 10 in the PM.

MissRita profile image
MissRita in reply to DHPSR

Any side effects?

DHPSR profile image
DHPSR in reply to MissRita

for me it was simple minor stomach upset for the first week or so as I adjusted it, now really none to speak of 12 months later, but in rare cases there can be other side effects, strongly recommend anyone planning to take it do their due diliegence on Ambroxol and advise their neurologist so they are aware (most know little or nothing about it, but at least they can look at it and see that it is pretty safe to at least try).

MissRita profile image
MissRita in reply to DHPSR

Thx!

I should add that taking Ambroxol may do more than help with your PD, it may also be a "possible prophylactic and/or treatment options against SARS-CoV-2 (COVID-19) infection", and I would like to think/hope possibly its variants as well.

the science:

pubmed.ncbi.nlm.nih.gov/329...

Despe profile image
Despe in reply to DHPSR

You have put a lot of effort into writing and answering questions about Ambroxol, its consumption, and beneficial results for you and other PwP. Greatly appreciated!

There was another forum member who wrote about Ambroxol trial and improvements that he/she experienced. Based on that post or comment written by him/her that time, I ordered the syrup as my husband didn't want to take "more" pills. I will get the Ambroxol pills now, can't ignore the improvements you have experienced. I hope and pray that they will be permanent. Is it the cure we have been looking for? Who knows, but it's definitely worth trying.

jackhammersbro profile image
jackhammersbro in reply to DHPSR

what was it that got you interested in trying Ambroxol in the 1st place

DHPSR profile image
DHPSR in reply to jackhammersbro

the 1st research study (link below) was pretty compelling that it worked on PD, and was safe to use even at a much higher dose, it was convincing enough for me to try it and take an action that I could now to slow my progression, and not wait years for big pharma to launch something that might work all the while my PD would be getting worse. I watched my grandmother slowly die from PD as a kid, and as a result I am extremely motivated to not go down that road and do whatever it takes that I can.

jamanetwork.com/journals/ja...

ZebraDoodle profile image
ZebraDoodle in reply to DHPSR

Can you comment on whether it’s affected your skin condition or your body odour please? Flaky skin / musty smell have been associated with some PwP. Any effect on your sense of smell? Thanks.

As far as a change in body odor from PD, I do see some research that supports that (link below), and some time ago my wife made some comments to me about that (nothing since, perhaps she is being kind), so maybe. Interesting the research suggests it emanates from the back of the neck, from which I had a fatty tumor removed a little more than a year ago now. No noticeable skin condition change. As for my sense of smell, definitely not what it was some decades ago, and PD likely hasn't helped, but it still works.

apdaparkinson.org/article/t...

ZebraDoodle profile image
ZebraDoodle in reply to DHPSR

Thanks - read somewhere about misfolded alpha-syn being detected in skin cells of PwP. Wondering if this causes smell / flaky skin that PwP often have. Think I have both. If I try Ambroxol I’m planning to get the other half to rate these amongst other symptoms in my experiment of one 🧑🏾‍⚕️

Does anyone have any views on type of Ambroxol ? What is the mechanism for the slow release pill and ís there any reason to believe it would be less effective? Do you take pills with food?

I’m currently taking 15x75mgSR pills per day. Have escalated according to Mullins trial protocol and starting second batch of pills (buying in batches of 500). Joint pain that made it difficult to walk sometimes has gone and wife complaining a lot less about my snoring at night. Felt quicker to respond and typing has been better although a lot of transient influences here so will have to see if sustained. Will write more when feel confident of any effects.

JayPwP profile image
JayPwP in reply to ZebraDoodle

What else do you do? Why do you think the improvement is due to Ambroxol?

ZebraDoodle profile image
ZebraDoodle in reply to JayPwP

Baccilus Subtillis and sporadic PD Warrior type exercise prior to this and currently. I made a list of symptoms prior to taking Ambroxol and these were the main changes I’ve noticed since.

JayPwP profile image
JayPwP in reply to ZebraDoodle

Thanks.

You may also like...