There are trials continuing with Ambroxol, wondered if any of you have tried it and at what dose and if it had any effect? I know in the trial they are eventually having up to 1050 mg per day.
Thanks!
Has any tried Ambroxol?: There are trials... - Cure Parkinson's
Has any tried Ambroxol?
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Alex2004
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If you do a search you'll find one or two threads on it. Its expensive and a lot of drugs to take for something that probably won't work. I say probably won't work as most trials fail.
Can you get it in the US
Summary: very specific "genetic" mutation PD application
AMB is another old, old, old "re-purposed" drug originally approved for sinus congestion, excessive mucus, etc.
The "theory" is that is may help to reduce an unwanted build-up of the toxic protein alpha-synuclein in the dopaminergic neurons, which is a defining aspect of Parkinson’s for many doing actual research and CTs in the PD field. Not everyone agrees, but it is popular.
NOTE --- AMB is focused on PD types who have a specific gene mutation called the GBA mutation which is genetic. If you have that mutation, fine. If not, forget this drug.
In other words, AMB has an extremely limited application in the PD world.
Sharon
Thanks Sharon. If it is safe to use, surely it's worth a try? What do you think?
If you have tested positive for the GBA mutation, it is a relevant drug. No human substantial data exist to suggest it will prove worth while for PD even if you do, but it is relatively safe (see my caveat below).
If you do NOT carry the GBA mutation, probably forget it. I doubt it will do any good except clear up your sinuses unless its theoretical use proves valid.
I believe it is OTC in the EU and UK. 3x by 30 mgs/day is normal dose.
It is NOT (not marketed/available) by MD script or OTC in the US for the reason it caused in some pediatric and adult cases FATAL LIVER DAMAGE when combined (as it often is) with Paracetamol ( a very common pain relief drug) and Phenylephrine.
Theoretically it can regenerate nerve growth (via in vitro and in vivo studies), but don't combine it with other drugs.
Always check with your "knowledgeable" doctor if you are on other drugs of any kind before adding anything new.
Sharon
Let me add...
What bothered me about the Mullin CT Ambroxol was 1) the escalating dose up to1.26 grams(!) per day, (were results dose dependent? Looks like it) 2) the modest results on Part 3 of UPDRS, and 3) minimal # of participants (17 or18).
I wasn't excited.
Sharon
Thanks Sharon. I wonder if just trying a lower dose would be worth a go. I'm concerned about interactions with other drugs. My Mum is on low doses of Rivastigmine, Memantine, Mirtazipine and a very low dose of Seroquel. Do you feel anything that might reduce the amount of alphasynuclein in the brain might be worth considering if side effects are limited?
Personally, I would be very cautious about adding anything to that cocktail. Your mother is already heavily medicated. I realize individual tolerances differ, but as people age, adding another drug is less effective than if they were younger. The returns diminish.
As I pointed out, Mullin escalated the dose amounts to a very high level probably because the lower level doses did not have the impact he was searching for. Nor do we know whether or not Mullin's participants were on other drugs or to what extent.
Your mother is an ALZ+ patient. Ask your physician who prescribed the cocktail his/her opinion. I don't think it will help given what she is taking already. On the other hand, they may feel it is worth a try since the cocktail probably isn't working all that well.
RIV = dementia drug
MEM = another dementia drug
MIR = depression drug, anti-depressant
SER = anti-psychotic drug
Sharon
Discuss these with your mother's physician. Don't wing it which appears you might do.
From 2019 clinical trial by Zhang on PDD patients...
"The test group was treated with a “cocktail therapy”, which consisted of 10 mg of donepezil hydrochloride tablets taken orally, once a day; 200 mg of dl-3n-butylphthalide soft capsules taken orally, 15 mins before each meal, three times daily; 800 mg of oxiracetam capsules taken orally, three times daily; and 80 mg of Ginkgo biloba extract tablets taken orally, three times daily. Treatment was administered for six months."
From Gu's 6 month 2015 PDD trial:
"the combined therapy of DHYZ with donepezil showed a more effective improvement in PDD and the underlying mechanism may be related to the synergistic amelioration of cholinergic system between them."
From Dubois 2012 CT with PDD:
"Although the study did not achieve its predefined primary end points, it presents evidence suggesting that donepezil can improve cognition, executive function, and global status in PDD."
Sharon
Thanks for those details Sharon. My Mum has Lewy Body Dementia and the trial of particular interest to me is ongoing in Canada - clinicaltrials.gov/ct2/show...
The patients have had dementia for some years and are all on relevant medication to improve their symptoms already. Alas, it's going to be many years before the results are available.
I have spoken to my Mum's consultant about Ambroxol but in the UK they won't advise on anything that hasn't been approved for use by NICE or relevant heath authority and it is not even used in the UK for it's original purpose, only in mainland Europe.
My current focus is still trying to find a way of alleviating the hallucinations and delusions which play havoc with my parents' lives but nothing really seems to work and my Mum doesn't tolerate higher doses of her current meds. Ambroxol hasn't been shown to reduce these symptoms but if it could help in other ways maybe the symptoms won't increase so rapidly.
I forgot it was approved only in the EU. Sorry about that.
Once again this CT is replicating Mullin's procedure in using "escalating" doses. "Participants randomized to the 1350 mg/day group will begin with a dose of 450 mg, increasing bi-weekly to a dose of 1350 mg/day."
This CT will give participants 18 capsules per day total? Your mother couldn't handle it. Who could? Therefore, impractical in your case even if you could order it from the EU or India and get it through your customs.
My suggestion only: try going with " 800 mg of oxiracetam capsules taken orally, three times daily; and 80 mg of Ginkgo biloba extract tablets taken orally, three times daily. " as a start using Zhang's CT with PDD (your mother) patients as a jumping off point. With GB, stick with the NOW capsule formula. It is 120 mgs. per cap, but is the correct percentage formulation. Give it time to see if it helps.
If that seems to work, then go to Donepezil (probably works better than RIV) which should be OK with NHS versus RIV to see if it works more effectively. It might.
In general, even your NHS admits the cholinesterase inhibitor drugs are a mixed bag of results and are NOT long lasting. Probably a 50% chance of actually working. (This to me is troubling if someone continues to use them without clear benefit. Why?)
Same goes for the other 2 drugs especially the antipsy. If you don't see a clear benefit, assess with your physician if they are worth continuing. (see your NICE 1.7).
Always, always, work with a competent physician with experience with PDD or ALZ patients when using the cholinesterase inhibitor drugs and other prescription medications.
Assess every 6-8 weeks. Keep a journal to record any changes.
Sharon
Hi Sharon, thanks for your continued advice. We are speaking to the consultant on Friday so I will discuss everything with them. My Mum says she has felt more confused since being on the Seroquel and the hallucinations are still as bad so we should definitely stop that one. Do you know who is a reliable supplier of oxiracetam capsules and Ginkgo biloba extract in the UK please?
Good luck.
I don't live in the UK; I would try Amazon.UK. Recommend "NOW" brand for GB.
***NOTE for UK ---- In the UK, nootropic smart drugs are not legal following the 2016 Psychoactive Substances Act. As an example, Noopept one of the better brain enhancing nootropics, is banned in the UK. Apparently, UK authorities are concerned about enhancing peoples's brains. Very, very serious about it.
If you want to bypass the UK nonsense, simply go to a decent UK/EU supplier: "intellimeds.net". Powder or capsules.
Several US sites (Nootropicsdepot, etc) can send them to you as well...assuming you can get them past UK customs.
Sharon
Thanks Sharon, I will look at all of these!
I believe trial results were favorable for both types of PD, idiopathic and genetic.
• in reply tosharoncrayn
actually Sharon the 1st trial on Ambroxol for Parkinson's completed in 2019 and reported on early last year found that it helped both those with and without the GBA1 mutation:
"Mean (SD) scores on part 3 of the Movement Disorders Society Unified Parkinson Disease Rating Scale decreased (ie, improved) by 6.8 (7.1) points (95% CI, –10.4 to –3.1; P = .001). These changes were observed in patients with and without GBA1 mutations."
jamanetwork.com/journals/ja...
Beyond that, all I know is that it's really helping me!
sharoncrayn• in reply to
Are you referring to the open label, ESCALATING DOSE, 17 participant case study (doesn't qualify as a CT)? I discussed its weaknesses above in an earlier post 6 months ago.
"Primary outcomes at 186 days were the detection of ambroxol in the CSF and a change in CSF GCase activity." So what?
Decrease of 6.8 from what initial value? what is moderate severity?
21 TABLETS PER DAY? seriously?
" Placebo-controlled clinical trials are needed to examine whether ambroxol therapy is associated with changes in the natural progression of PD." Obviously and with a much larger sample (i.e. 100+).
Sharon
• in reply tosharoncrayn
seriously Sharon Ambroxol really works for me, and in the latter part of next year when the findings from the current trial underway come out, I have every confidence that everyone with PD will know that; and meanwhile I will not have lost 2 years of progression waiting to read those findings, with perhaps less hope of ever turning it around, as I already know it does!
sharoncrayn• in reply to
I hope you are correct. I will take a wait and see. If it can reduce motor complications, it will be a blessing,
yes, I've been using Ambroxol for my PD for almost a year now, with some pretty good results. #1 my mental clarity has been excellent, the brain fog I used to have is just not there anymore - which is huge for me! I've also had some movement improvements, and been able to totally eliminate Ropinirole from my meds. I take about 600mg of Ambroxol per day, and currently source it on Amazon. In the trial you mention, I believe 1050mg is the high dose level, what I'm taking is the low dose level, but it's still helping me alot!
sharoncrayn• in reply to
Glad to hear it.
Amazon does not sell the ambroxol used in the study. They only sell 30mg (300 tabs) by Eg Labo for $75.00, which means you are taking twenty(20) a day.
1050 as the high dose is wrong. The high dose was 420x3=1260.
I hope you have discussed this regimen with your doctor.
Sharon
The EG Labo product on Amazon is Ambroxol hydrochloride, equivalent to what was used in the study provided by another vendor, which was also in blister packs. Yes, the high dose level in the completed trial (1st link below) is 1260mg, but there are other trials underway with a high dose at 1050mg (2nd link below); in my view anything over 1000mg a day is a high dose, with what I'm taking at 600mg a low dose by comparison (and close to that in the trial underway). Yes I take (20) 30mg tabs per day. Yes I have discussed it with my neurologist, two in fact, and they are both fine with it - my neurologist of 4 years is even noting the slowing and mental clarity. But I really don't need him to tell me that, I live the improvement every day!
jamanetwork.com/journals/ja...
bmcneurol.biomedcentral.com...
Gioc• in reply to
Interssante, here is something more practical, but after how long have you seen the results?
in my 2nd month for example I started observing the PD brain fog lift, it has not returned since as I remain on it.
Alex2004• in reply to
Hi there, how are you doing? Are you still getting on well with the Ambroxol? Thanks
yes, almost 16 months on Ambroxol, still keeping my mind clear of PD brain fog, reducing my freezing episodes, mitigating my left shoulder PD nerve pain, and some left hand and more recently noted larger mobility improvements, also still managing with 1/2 my prescrip of C/L (trying to avoid C related dyskinesia).
Alex2004• in reply to
Glad to hear you are doing well. I’m considering this again for my Mum who has Lewy Body Dementia as nothing else has helped her in 3 years. Where are you based / do you buy Ambroxol from? Thanks
Amazon US, UK, CA and other countries list Ambroxol, or you can go straight to their source, or search on it - just make sure it is a reputable company with a solid QC process, fast delivery if that is what you need (some can take weeks), and a good return policy.
20fatcats• in reply to
They wouldn't ship to us in NZ so we asked our chemist to source it. He got it in for us from the manufacturer . It took a couple of months. he was very good to us and went to alot of trouble to get it. I had to get the script from my doctor who is an open minded integrated doc. Unfortunately when it arrived we got cold feeet and havent taken it. Worried encase theres interactions etc. It also was going to cost alot to take the recommended dose .It said 16 tablets aday. So would have gone through them very fast. If you know someone in Holland or thereabouts they could by it off the shelf and post to you maybe? At the chemist over there its not expensive.
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