A member of our community here suggested that I repost this answer to their question separately for all with PD to consider. The question is why should someone with PD consider taking Ambroxol, or more specifically what did it do for me and how much do I take?
The 2nd question first. I followed the last completed Ambroxol trial protocol (in the 1st link below), and stopped at 600mg a day (300mg 2x day), but the completed trial stopped higher at 1,260mg a day. I had minor stomach upset in the 1st week or so as I adjusted to it. My neurologist did not suggest that I try it, but he is fine with me taking it; in fact, this week he asked me to tell him where he can get it if any of his other patients want to try it. You can find it on Amazon in the form I take, which is ten 30 mg tablets 2x daily (each blister pack contains ten 30 mg tablets, three blister packs to a box), but you may find it elsewhere as well. It is OTC in Europe, France for example it is approved as a cough medicine, which it has been doing well for almost 50 years with an excellent safety record. The dose I am taking is 5x normal for cough, but way under what they have given safely to pregnant women (in the 2nd link below, which discusses a current trial underway on Ambroxol for PD dementia).
As for what it is doing for me, the #1 benefit to me over the one year+ I have been taking it is cognitive - keeping me clear headed and free of PD brain fog (and given our 50%+ PD dementia risk, that is no small benefit; my grandmother wasted away from PD dementia until her death, not something I for one am willing to risk). It has also reduced the severity and number of my freezing episodes, and helped me with some small motor functions (like typing this and facial gestures, loosening our PD mask). Now at one year I'm beginning to wonder if it helping me with some larger motor functions too (seems to be much easier for me to get out of deep couch for example). One thing I tend to forget is how it stopped my shoulder nerve pain from PD, which it did early on months ago (it has sodium channel blocker properties which make it an excellent nerve pain fibromyalgia medicine as well). The 2nd link below on a current trial underway in Ambroxol for PD dementia includes a pretty powerful statement about Ambroxol: "This (Ambroxol) strategy could stop or reverse the underlying pathology of PD; it might allow patients to get better."
As to why I felt it was critical for me to start when I did and not to wait two years until the current trial completes and its benefits are more well documented (it has not ended early which is a good sign), that rationale is in this statement (3rd link below): "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." In other words, for those of us with PD, there may be literally no time to waste, and I'm not prepared to waste any!
It is on ebay also. It needs a high dose. Like 25 pills a day ! I was reading the study. The best deal I found was from the Philippines. About $50 for one hundred capsules. Would that mean it lasts only 4 days? It sounds like it would be pricey .
I take what is close to a low dose daily in the current study, twenty 30mg tablets per day, ten in the AM and ten in the PM, 600mg total versus 525mg low dose in the study. Amazon regular price is about $75 for 300 tablets with free shipping, or $.25 cents a tablet, about $5 a day then for 20 tablets, but there are other sources for it.
It should be available to you on Amazon too? I take the low dose at 600mg daily (525mg in the current trial), so about $4-5 daily depending on discounts, cannot afford not to take it given my progression alternative, but you are not alone, this patient from the completed successful trial reported last year felt the same way:
yes, there are rare side effects (even aspirin has rare side effects), that's why your doctor should know you're taking it and be ok with it, and probably why the trial protocol starts out so low at 60mg for the 1st week. In my case, I had some stomach upset for the 1st week or so while I adjusted to it, but really nothing since in over a year now.
Some safety stats:
"Ambroxol has an excellent safety record, and has been studied in >15,000 patients in more than 100 trials. Ambroxol is sold over the counter in much of the world as an expectorant at doses of 75-120 mg/day. Furthermore, Ambroxol is considered so safe that it is approved for intravenous use in pregnant women at a dose of 1000 mg/day IV (15 mg/kg) to improve fetal lung maturation before preterm delivery. Clinical trials in more than 390 pregnant women have been performed using doses up to 3000 mg in one day and 1300 mg/day for up to 33 days. Critically ill neonates have also been given doses as high as 30 mg/kg for respiratory distress. The fact that Ambroxol has been used at very high doses in pregnant women and neonates suggests that these doses are safe."
What my neurologist(s) have said to me is that they don't have a problem with me taking it, not technically quite the same as ok'ing it for them, but all I needed to know.
Just wondered if you have been tested to determine whether you have a defective GBA1 or similar gene which, if I understand, may be one of the primary causes of a certain percentage of PD cases.
not yet, but plan to do so, my maternal grandmother had PD and slowly died from it over a number of years while I was a kid, so there may indeed be a genetic connection for me as well as environmental. This is where I was told to apply for a free test:
My paternal grandmother had mild PD and extreme dementia. My father has PD and Lewy body dementia. I’m 45 with the beginnings of PD and memory and anxiety issues. I’m desperate to try anything.When PWP talk about their grandkids I’m so jealous. To be young onset is really a different demon. I just want to be the best Mom I can be until my kids are at least young adults and on solid footing.
So, I relate to your willingness to try this.
I will do anything to protect my kids from enduring what I’ve gone through with my Dad.
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If I can help more, just let me know. One of the most interesting exchanges I had this week on PD was when my neurologist asked me where to get Ambroxol in the event any of his other patients wanted to try it.
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
Exanatide is a possibility in a few years, but it does have some pretty serious potential side effects, much more serious than Ambroxol, and in the end I'm not certain its going to do a much better job than Ambroxol in slowing progression (probably will also need insurance coverage given the likely cost). Maybe, we'll need to see, in the meantime I'm going to stick with Ambroxol as its available now, and I can't afford the time in my progression to wait.
I must relate that I took Byureon (Exanatide) for five years and never worried about any heavy side effects (a bit of nausea when you start out). So did millions of others. Exantide essentially replicates a hormone that is already in your body naturally but which lasts a week (in Bydureon) instead of only minutes -- not some strange artificial molecule for whatever that is worth. Ups your insulin output, slows digestion to spread out sugar increase over time. Again millions use it.
Treatment with exenatide was not found to be associated with an increased risk of pancreatitis compared with placebo or non-incretin–based active comparator in this population. These data show that 8 of 5596 patients (0.14%) treated with exenatide had pancreatitis, of whom seven recovered with or without sequelae.
looked at Exanatide a little more re side effects, and looks like may not be an option for me given common possibility of GI adverse reaction (slowed gastric emptying, nausea, vomiting, and diarrhea), so not recommended in patients with GI disease like Crohn's which I have, but perhaps they will have a better handle on my risk in a few years when available. Thanks, plan to keep watching it!
DHPSR:
How long did it take before you noticed cognitive improvements? Other PD improvements?
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cognitive in the 2nd month, as well as a reduction in the nerve pain in my shoulder, I started noticing some small motor improvements over the next several months, like typing and facial gestures (which my family noticed), as well as reduced freezing. So far what I believe I have experienced is a significant slowing, with the cognitive component being sustained very well (& meaning the most to me), it remains to be seen whether a higher dose like in the 1st trial would do more for me (and is the appropriate dose stage dependent or not; I am in stage 2 at four years since diagnosis)), or if it just needs more time (we didn't get into this dopamine deprived state overnight, it took years), or both (findings published next year on the current trial should help answer those questions). Also if perhaps some antioxidant and anti-inflammatory supplements would further support this treatment (like Acetyl L Carnitine, N-Acetyl L-Tyrosone, N Acetyl-L-Cysteine, & Ubiquinol, all of which I now take as well, not to mention dietary changes and of course exercise).
good question, in fact I did cut back on my PD meds, I've stopped taking Ropinirole (Requip) altogether (very bad side effects for me), and cut my Carbidopa/Levodopa daily dose almost in 1/2, while so far avoiding any dyskenesia as well.
I have asked my neurologist that question, and after looking into it, he did not find any drug interactions that I should be concerned with; in addition to Levodopa, I take Amantadine & Rasagaline (Azalect).
For someone with Stage 2 symptoms without dyskinesia, you seem to be taking quite a combination of PD meds: C/L, Amantadine and Rasagiline, and that’s after quitting Requip. Doesn’t it make it harder to tell if it is Ambroxol that’s doing the work for you? Of course I really hope it is.
My brain fog and shoulder nerve pain cleared up within a couple of months of my starting Ambroxol early last year, I really had no other changes to my meds during that period to cause that or confuse with it. Likewise the reduced freezing, typing and facial gesture motor improvements after that. Believe it or not, I actually still feel Ambroxol clearing my head not long after taking it, nothing else I take has that kind of impact on my brain. I stopped taking Requip about 6mo's ago, and now take about 1/2 my prescribed C/L daily dosage, so I'm more dependent than ever on Ambroxol to do the heavy lifting for me on movement, in combination with my supplements and exercise. Hope that helps
"Ambroxol has an excellent safety record, and has been studied in >15,000 patients in more than 100 trials. Ambroxol is sold over the counter in much of the world as an expectorant at doses of 75-120 mg/day. Furthermore, Ambroxol is considered so safe that it is approved for intravenous use in pregnant women at a dose of 1000 mg/day IV (15 mg/kg) to improve fetal lung maturation before preterm delivery. Clinical trials in more than 390 pregnant women have been performed using doses up to 3000 mg in one day and 1300 mg/day for up to 33 days. Critically ill neonates have also been given doses as high as 30 mg/kg for respiratory distress. The fact that Ambroxol has been used at very high doses in pregnant women and neonates suggests that these doses are safe."
Nevertheless, like most medications there are rare side effects, and your doctor should know you're taking it.
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Hi DHPSR:
In response to Jay's "DHPSR said 'no decline' in cognitive function, it is not the same as 'cognitive improvement'" post below, can you please clarify>
In the original post you said that Ambroxol was "keeping you clear headed and free of PD brain fog ".
So you were clear headed with no brain fog when you started taking Ambroxol and you remained that way, or you had become less clear headed with more brain fog before taking the Ambroxol, and the Ambroxol improved you?
I had pretty bad what I call brain fog before starting Ambroxol, and it was getting worse, making it very hard for me to think clearly. I have always had high pressure, very mentally demanding jobs, so this was no small problem for me. I spend a lot of time thinking hard about things, concentrating on new ideas, so Ambroxol has proved itself to me #1 by clearing (improving) my fog and keeping me clear headed. Does that help?
If you are trying to match the high dose in the current trial, it would about double what I'm currently taking, but in my case I am only taking (at 600mg) close to the low dose being tested. For me that is more than affordable insurance against the worst case PD, something I cannot afford not to do/take given the alternative in what I watched happen to my grandmother with PD dementia.
CURRENT PD FOR DEMENTIA TRIAL
"This is a phase II, single-centre, double-blind, randomized placebo-controlled trial involving 75 individuals with mild to moderate PDD. Participants will be randomized into Ambroxol high-dose (1050 mg/day), low-dose (525 mg/day), or placebo treatment arms."
For those of us considering this, dosage seems to be an important variable, both for cost and possibly effectiveness. The recently completed study had a gradually increasing dose. The upcoming study has a group of people at 525 mg per day and 1050 mg per day. DHPSR, you have settled on a middle ground of 600 mg. How did you decide on that dose?
one blister pack has ten 30mg tablets for 300mg so I use one blister pack in the AM and one in the PM, makes it easy for me, slightly over the low dose, also hedging a little bit if they determine the high dose is more effective in the study findings next year.
Does anyone know if Bisolvon tablets have the same effect? The active ingredient is bromhexine hydrochloride. They are much cheaper here in Australia, so I'm hoping!
Thanks. I know it's available in Australia, but the cost is $100Aus for 300 tablets. The reviews I have read say bromhexine hydrochloride is converted into ambroxol in the body. I just wondered if anyone on the site with knowledge of pharmaceuticals could tell me if it might work on PD in the same way.
Thank you for sharing your successful experience with Ambroxol. Although my husband is on its cough syrup, not enough to meet the trial study. Will most likely switch to the pill.
Ambroxol must be the closest disease modifying medication that is available right now, plus it's OC and no prescription is required, a nightmare here in the US!
1. my neurologist has not expressed any concern to me about taking any of the B vitamin family with Ambroxol, but you should always check with yours to be safe since they know you and what you take. I take B12 in addition to Ambroxol, etc.
2. I followed the escalation protocol in the 1st trial below, but stopped at 300mg 2x day. I did have some stomach upset in the 1st week or so while I adjusted to it, but nothing to really speak of since then in over a year now. It does have a somewhat harsh taste, and I always recommend you keep some of your favorite chocolate around to help with that.
"The 186-day exposure period comprised 28 days of dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day)"
What brand do you use? Do you buy it on line? You mentioned the Amazon one above. Is that the one you use. I’m just worried it isn’t genuine. When you finish your trial will they keep supplying you or do they recommend where to buy more if you want to buy it yourself?
Company name is "Xi'an Tian Guangyuan Biotech Co., Ltd" Thier representative name is Winnie. Her WhatsApp number is. +86 19894538675. Get quote directly from her. They keep margin in the price, therefore contact me for price suggestion before ordering (if you want to place an order), I will guide you for getting minimum price. She sends Alibaba link for order finalization
Hi she has replied and asks how much powder I want. Does it come as a powder or tablet? Larger than 30mg doses would be ideal if he is having to get up to 10 at a time but powder sounds awkward. Can it be mixed into food? I just tried to nibble on a tablet from the genuine product from Amazon and it is not a pleasant flavour. It tastes rather like b1 actually!
This is the webpage link tgybio.com. It seems ok on the surface but once delving into the various tabs it appears it doesn’t have anything under products etc.
I can potentially get a sample tested against a tablet from the other company but I would have to look into how expensive that would be.
Personally i would want it tested. By a lab where i am the client (i.e they report directly to me). I.e one in NZ. You want to know that it is what they say it is, and just as importantly, that it's only that. Testing wont be cheap.
Yes, I agree. It would only be worth it if one was intending to take it on the high dose for an extended period. Otherwise I think I will stick to the other brand even though it is expensive for the short term to see if it actually helps.
Ok, lab says this “We would need to review the details further for this product before committing to any testing. The costs are likely to be upwards of $500 for an identification, up to several thousand for assay and impurity analysis - as we would need to set this up as a new test and obtain all the required materials”
The problem is it’s money wasted if it comes back as no good I guess. And it doesn’t mean the next batch would be ok even if it is ok.
I have purchased few other things from them through Alibaba. Magnesium l threonate , Mucuna extract, tribulus extract etc. Although I have not carried out lab test, but the taste and effectiveness of their products show that it's genuine. There are positive feedback from customers on their Alibaba page
Hi. please excuse me if I should already know this as the dates are probably there for me to see.I am wondering if the update on how you are going with Ambrosol is current.
my hubby was diagnosed in 2018 and I am trying to keep up with the latest info on treatments and possible drugs which may help... basically before it is essentially too late.
We live in New Zealand and Ambrosol by any name is not available here it seems....not over the counter anyway. I see it on Amazon. we can order but it may be stopped at customs. we will try.
I will phone our hospital neurology dpt and see if it can be prescribed but chemist not heard if it.
wondering...(if your update was not recent) how you are on your journey with it at present.
I have got one lot from Amazon no problem, and have just ordered another 2 packs. I’m in NZ. Did you try it in the end? I am assuming it is the genuine product. Is this what others are using?
glad you found your answers, if you have other questions, please post and will answer as I can.
Some of you may have heard of Gaucher's disease, there is a relationship between Gaucher's and Parkinsons - sometimes people with Gaucher's disease accumulate the brain protein synuclein, which is believed to be the culprit behind Parkinson's disease (more in a link below on this connection). It's this accumulation of synuclein that Ambroxol has been reported to reduce or dispose of through its increase in normal glucocerebrosidase (GCase protein) enzyme activity. In any case, why I'm discussing this connection is because the study finding below is what Ambroxol did for some Japanese Gaucher's disease patients with neurological problems like PD can cause:
"Ambroxol has also been administered to five Japanese Gaucher disease patients with severe neurological disease, at 25 mg/kg/day or a maximum dose of 1300 mg/day for 6–48 months [29]. Despite their advanced disease, patients had improvements in neurological symptoms (decreased myoclonus and seizure frequency). Improvements in myoclonus allowed two patients to stand steadily, control their balance, and walk again."
Hi, you mentioned it's on Amazon...what specifically if I wanted to get the exact ones you buy? That's the best way I know that would have best chance to duplicate your experience.
you should always let your doctor know you are thinking about it. I started with the completed trial escalation protocol below to be safe to check for any rare reactions and basically adjust to it (starts very low), and I stopped at 300mg 2x day (app. the low dose in the current trial on Ambroxol for PD dementia). I had some stomach upset first week or so, I keep some chocolate around to offset somewhat strong taste.
"The 186-day exposure period comprised 28 days of dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day)."
as I escalated dosage toward the trial maximum I did start experiencing my brain fog lift within a few weeks, and I also stopped at 600mg per day post week-4 for most of the past 16 months (closer to the low dose in the current trial underway).
Can you describe the strong taste at all? I just had a nibble on the edge of the tablet from Amazon and I would liken it to the taste of the vitacost B1 HCl. Have you tasted that and do you think it is similar? Just hoping we have actually got the right stuff.
Also did you notice if it affected your appetite? I gave hubby his first dose yesterday of 1 morning and night with food and he is reporting loss of appetite. This could be other things too so might not be related.
Taste is somewhat harsh, would say almost bitter, I usually take it with lemon ice tea and the lemon does a good job of offsetting the taste, as does a good piece of chocolate if you have one handy nearby (prefer dark myself). You do get used to the taste after awhile, but I still prefer not to chew them and swallow them with water, although I do once in awhile when I have to. When I consider how I think they're helping me, the taste issue is pretty much a non-issue in the scheme of things and can be managed. As for appetite, it is common to have some stomach upset in the first week or so while you adjust to it (I did as well), the trial escalation protocol I believe starts out very low in the first week or two so you can do just that. As always you should make sure your neuro is aware, in my case mine is - he of course knows everything else I am taking, and he's fine with it.
“Intrinsic chaperone proteins are chemical compounds that serve to directly stabilize misfolded GCase in the ER, allowing more functional proteins to form that can evade the ER-associated degradation pathway. Ideally, these small molecules selectively bind to mutant GCase at the neutral pH of the cytosol, and then lose their binding affinity as the enzyme enters the acidic pH of the lysosome. Ambroxol, one such chemical compound, was selected as a candidate chaperone protein identified from high-throughput screening of an FDA-approved chemical library composed of 1040 compounds [137]. Administering ambroxol to patient-derived mutant GBA1 cell lines rescued GCase activity and increased GCase levels on a dose-dependent basis [138]. While murine Gaucher models have responded favorably to ambroxol administration, Parkinson related symptomology does not seem to be affected [138]. L444P/+ mice treated with oral ambroxol for 12 days exhibited increased GCase levels compared to vehicle controls, but there was no change in α-synuclein levels [139]”
Question Does ambroxol cross the blood-brain barrier, and what are the biochemical changes associated with ambroxol therapy in patients with Parkinson disease with and without glucocerebrosidase gene mutations?
Findings In this open-label clinical trial of 17 patients with Parkinson disease, ambroxol crossed the blood-brain barrier and bound to the β-glucocerebrosidase enzyme, and it increased β-glucocerebrosidase enzyme protein levels and cerebrospinal fluid α-synuclein levels in patients both with and without glucocerebrosidase gene mutations.
Meaning Ambroxol therapy has potential for study as a neuroprotective compound for the treatment of patients with Parkinson disease both with and without glucocerebrosidase gene mutations.
Conclusions
In conclusion, we confirm that ambroxol has potential as a drug to target the glucocerebrosidase pathway in PD and increase GCase activity in the brain. These findings concur with cell and animal modeling, which indicate that ambroxol modulates α-synuclein levels. We believe ambroxol therapy has promise for further investigation as a drug to improve outcomes, particularly in patients who have PD with a GBA1 mutation and potentially in those without a GBA1 mutation.
" L444P/+ mice treated with oral ambroxol for 12 days exhibited increased GCase levels compared to vehicle controls, but there was no change in α-synuclein levels [139]”
A little bit confusing to me. Maybe someone could help to explain? It seems like they are referring to the same study [139] as they do in the ongoing PDD study with Ambroxol (with reference [27] in that paper).
[139] (Ambroxol effects in glucocerebrosidase and α-synuclein transgenic mice.
Migdalska-Richards A, Daly L, Bezard E, Schapira AH
"In mice, oral Ambroxol for 12 days increased GCase activity in the brainstem, midbrain, cortex, and striatum of wild-type as well as transgenic mice carrying a L444P mutation (i.e. a GBA1 mutation) [27]. The same study found that transgenic mice overexpressing human α-synuclein treated with Ambroxol had a reduction in α-synuclein levels in the brainstem and striatum compared to untreated mice. Furthermore, Ambroxol reduced S129 phosphorylation of α-synuclein (suggested to play a critical role in α-synuclein aggregation and formation of Lewy bodies and neuritis) in the brainstem by 41% in treated mice compared to untreated mice. "
The two papers refer to two different findings from the same mouse study regarding the effect on α-synuclein levels from the ambroxol intervention. Which is most the most relevant finding for PWP? Is that depending on if you have L444P/+ mutation or not? Is it saying that it is more likely to obtain a reduction of the levels if you do not have the mutation?
I have also taken a brief look at the study [138], but need some help to understand how they conclude:
"While murine Gaucher models have responded favorably to ambroxol administration, Parkinson related symptomology does not seem to be affected [138]".
The paper [138] seems btw be from 2015. The Parkinson pilot study published in 2020 showed decreased motor symptoms. An open-labeled study and with a small group, but still a different outcome compared to the statement.
Understand the confusion, but for me at least, the most important trial results are those with people (including my own now going on 16 month experience with Ambroxol), as in the first trial you mentioned published in 2020. We should know more definitively when findings from the current trial in Ambroxol for PD dementia are published next year, which given it did not end early and comments posted from two in the first trial plus my own experience, I expect will be positive.
Question Does ambroxol cross the blood-brain barrier, and what are the biochemical changes associated with ambroxol therapy in patients with Parkinson disease with and without glucocerebrosidase gene mutations?
Findings In this open-label clinical trial of 17 patients with Parkinson disease, ambroxol crossed the blood-brain barrier and bound to the β-glucocerebrosidase enzyme, and it increased β-glucocerebrosidase enzyme protein levels and cerebrospinal fluid α-synuclein levels in patients both with and without glucocerebrosidase gene mutations.
Meaning Ambroxol therapy has potential for study as a neuroprotective compound for the treatment of patients with Parkinson disease both with and without glucocerebrosidase gene mutations.
Just below those mice results you quote is the following pretty powerful statement as well on some Gaucher patients with PD like neurological disease:
Ambroxol has also been administered to five Japanese Gaucher disease patients with severe neurological disease, at 25 mg/kg/day or a maximum dose of 1300 mg/day for 6–48 months [29]. Despite their advanced disease, patients had improvements in neurological symptoms (decreased myoclonus and seizure frequency). Improvements in myoclonus allowed two patients to stand steadily, control their balance, and walk again.
Hi I am always so impressed by everyone’s energy, knowledge and enthusiasm. Thanks you to all contributors.
Any recommendations for purchasing Ambroxol in UK please?
One option is Amazon UK, but there are others as well in the EU, just make sure a reputable manufacturer, no QC issues reported, fast shipping if desired, good return policy & pricing.
This is so exciting. I don't have PK, I have REM Sleep Behavior Disorder. Ambroxol sounds like something that could stop RBD from progressing. $5 a day for 600 mg does not sound too bad considering the benefits. Maybe even less would work as a preventative measure. Thanks so much for sharing!
Ambroxol for me at least has slowed my PD progression over the past almost 16 months, it's very hard to say how much when you can't really know how bad it would have been without it. What I can say is that it has absolutely helped me maintain my mental clarity and keep my PD brain fog at bay. In addition, it has helped reduce my freezing episodes, manage my left shoulder nerve pain from PD, and in my experience improved some of my motor functions in for example my left hand, and I believe even getting up from a deep couch this year. It may be that I should take a higher daily dose than I currently take (600mg per day) to see further long term benefits, which we'll find out next year when the current trial results are published. Hope that helps.
C/L 1.5 25-100mg tabs 2x daily (1/2 my prescribed dose)
Amantadine 100 mg
Rasagaline 1mg
I discontinued Ropinirole (Requip) last September, developed some very bad side effects after being on a high dose for awhile, now pretty much letting Ambroxol (and my various supplements to support it) do the heavy lifting for me in terms of movement therapy
You are being so helpful. Thank you so much. Of course I have another question. Are you layering any other alternative therapies? Keto diet, High Dose Thiamin, Melatonin, Red Light? Tudca or Restore Gold? (Idebenone seems like it might be useful too. They are trialing it for slowing the progression of REM Sleep Behavior to something worse).
I'm just wondering because that is what I am trying to do for my RBD. Layer things.
not trying any of those other alternative therapies you mentioned, just a selection of supplements I have determined work best for me in combination with Ambroxol and std PD meds (which helps me maintain a low dose of C/L)
Has anyone here had a 23andme DNA test? Gaucher’s disease looks like it is linked with specific genes and ambroxol alleviates the symptoms of Gaucher’s disease. It would be interesting to see for people who are taking the ambroxol and are finding improvement whether they have these gene SNPs. And also whether people without the SNPS also find improvement. Then if it only helps those with the Gaucher’s disease SNPs it would be good to be able to take the test before trying it as it is quite expensive and a lot of tablets to get down.
This is the link if you want to get your DNA analysed. It’s a pretty reasonable cost and I feel like more and more it might be useful information to have on hand.
Will you carry on taking the ambroxol for life at the high dose? Does it clear out the build up of mucus then are you able to stay on a lower maintenance dose or does it keep being produced and having to be removed?
Unless and until something better comes along, I expect to be taking Ambroxol the rest of my life to slow my PD progression. At a minimum at the low end range of the current trial (which was close to my 600mg/day for most of my 16 months taking it), or perhaps higher (closer to 1,000mg/day) if the current trial results exhibit a major difference between the two dosage levels, which they very well might.
It is the active ingredient of Muciclar (Italy), Mucosolvan, Mucobrox (Spain), Bisolvon (Australia and Switzerland), Mucol, Lasolvan, Mucoangin, Surbronc, Brontex (Lithuanian), Ambolar, and Lysopain.”
These are 8mg tablets so you’d need a huge amount of them. But potentially it might mean a compounding pharmacy might be able to make a bigger capsule but might need a prescription and as it is off label they might not be allowed to.
Did you test to see if you have the Gaucher’s disease gene? I notice they trialed it on people with and without it.
This quote appears in the July 2020 article entitled 'Enhancing the Activity of Glucocerebrosidase as a Treatment for Parkinson Disease', CNS Drugs 34, 915–923 (link below - unless you can find it elsewhere, you will need to purchase or rent it to read it all including this quote, I rented it):
"Among the class of small chaperones, ambroxol is one of the most promising candidates as a disease-modifying treatment in Parkinsons".
New 2021 research article on Ambroxol, Gauchers and PD in American Journal of Hematology. The high end range of treatments was 76 months and 1,485 mg/day, the low end was very low, and the median was 19 months and 435 mg/day. Of the first 41 patients studied, clinical benefits were reported in 25 of them - “including stable or improved neurological status, increased physical activity, and reduced fatigue”. Of those who did not report a clinical benefit, it is not cited how long or what dose they were taking, and whether or not they were at the low end of the range (which I think quite possible if not likely). The article ends in a very positive manner supporting Ambroxol use for PD by stating “these preliminary data may be encouraging to physicians and patients who consider an off-label use of ambroxol." Wow. It may be time to get Ambroxol in front of your neurologist (if you haven't already) and discuss it with them, with our progression in my view there is literally no time to waste.
Upgrading the evidence for the use of ambroxol in Gaucher disease and GBA related Parkinson: Investigator initiated registry based on real life data
"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."
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Anyone in the UK interested in a webinar entitled “Getting Involved in Trials and the PD Community”?
Any news on Ambroxol trial?
Ambroxol experience?
New link found between PD & Melanoma
