Firsthand Ambroxol experience

[ZebraDoodle]

Please can ONLY PwP taking Ambroxol post their experience here please? (And no one hijack the thread/send it off-topic!!) Have trawled Google and found three persons’ experiences (Jellywoman, dhp and one other on here) Thanks!

[ZebraDoodle]

Jellywoman’s blog post on her experience thejellychronicles.net/2020...

DHP’s Experience

forum.parkinsons.org.uk/t/a...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

Andy_f

healthunlocked.com/cure-par...

whatadrama123

healthunlocked.com/cure-par...

Momgotshocked

conversations.smartpatients...

Zz

See comments here:

scienceofparkinsons.com/202...

[JayPwP]

DHP seems to be our resident Ambroxol expert Hidden

healthunlocked.com/cure-par...

[ZebraDoodle in reply to JayPwP]

Thanks - whatadrama123 reports husband’s initial experience on this thread too

[pmmargo]

Please forgive if not quite first hand. My boss's husband who is a physician with PD tried it. It is a cough medicine available from the Phillipines. He tried and it did not agree with him. Like me he has the GBA gene mutation. Best wishes to you!

[AngloAmericanGothic]

I might have mentioned it in an earlier post but my pwp took ambroxol for 6 months using the same dosing schedule as the trial. Nothing. Sigh.

[amykp]

I take it...a bit over a gram every other day (because I am running out right now). I also have a GBA mutation. I feel no daily effects, good or bad, except maybe a slightly runny nose.

I don't expect to feel daily effects--I expect(?) it to hopefully slow progression overall. So far, my disease course is slow, but I'm a sample of one with no placebo so who can really say why?

Right now I take the 75mg capsules, 10-15 of them at a time. I am in the process of trying to order the pure powder from India. I want to make my own 500mg capsules...then I can take 3 of them.

If I'm successful, would anyone else like the source? I'm happy to share the name of the company. (It's taken a lot of research and help from a pharmacist friend :o)

.

[glenandgerry in reply to amykp]

Yes please amykp, I would very much like the source.My PWP has been taking Ambroxol 30mg tabs for the past 10 days. I started him on 2 x 30mg am and pm, and titrated up to 10 x 30mg twice a day. He didn't feel so good at 20 tabs per day so I have reduced him down to 14 tabs a day but will try increasing again slowly. He would like to stick with Ambroxol to try and gauge the benefits (if any) but doesn't enjoy swallowing so many tablets

I hope you are successful with your source from India, and thanks for offering to share the info.

[amykp in reply to glenandgerry]

I will!

[ZebraDoodle in reply to amykp]

I’ve added a suppliers thread here:

healthunlocked.com/cure-par...

[glenandgerry in reply to amykp]

Did you ever have any joy with your supplier in India btw Amy?

[amykp in reply to glenandgerry]

Yes! We bought a kilo, and it SEEMS fine...it's a white powder, it tastes exactly like the tablet--that is to say, awful--and it came with a COA (a certificate of analysis). But it's pure, not cut with anything like the tablets and capsules are, so I made my own, and because the powder is fairly dense one perfectly reasonable capsule holds 700mg.

I take two a day, for 1400mg a day. That's a pretty high dose...I think in the study they are using 1200. But it's in line with the original Japanese study for Gaucher's.

I began this regimen on June 1st BTW. I haven't noticed any particular change yet. But my symptoms are pretty mild to begin with. I don't expect to see much of anything for months...and maybe then only that I don't get worse.

PM me and I'll send you the contact info! :o)

[pmmargo in reply to amykp]

You should keep track of Prevail Therapeutics gene therapy for persons with the GBA gene mutation. It is a bit risky but they can fix the mutation for us. Watch for cytokine reactions.

... I just looked and Prevail has been bought by Lilly:

investor.lilly.com/news-rel...

Here is link to prevail:

prevailtherapeutics.com/

Don't miss the amazing picture of brain at link:

brain

[amykp in reply to pmmargo]

I wanted to be in that trial...but don't fit their requirements. Am still in stage 1. Which is a good thing I guess, but annoying in this case :o)

[cmc2]

I tried it for two weeks on the dosing schedule of the trial , but had to stop as I started to get skin reactions. Within a few days my skin returned to normal. I may try again taking a more gradual approach.

[Discogs_discogs]

I tried Ambroxol for only ONE day, but it made my eyes twitch and I could not focus visually. I therefore stopped, but I might resume later. Perhaps the Ambroxol interfered with my MAOI med? To anyone who answers ZebraDoodle's question, could you possibly include your dosing as well? Those using Ambroxol on here take such extremely high doses, and I would love to hear testimonials from those who consume the normal 32 mg per day amount (normal for traditional/healthy/approved Ambroxol use, at least). This is not an OP highjack. I look forward to hearing many answers to ZebraDoodle's question. Thank you.

[amykp in reply to Discogs_discogs]

Some of the trials increase the dose gradually. I might try that. The problem is, only a small percentage of the drug gets past the blood brain barrier--into your brain. So for it to be effective in the right spot you (theoretically at least, for real, who knows?) need a fair amount.

But for sure, start small and work your way up!

PS. For what it's worth, I take an MAO inhibitor: Azilect. 1200mg of ambroxol does not bother me...but of course we are all different.

PPS. I take the 75mg extended release capsules, so they don't hit my system all at once. Maybe that makes a difference?

[Hidden]

I posted this elsewhere below, but I think could be helpful here as well. As for dose escalation schedule, for me it was important to follow the trial protocol completed last year - starts out very low & gradually builds to help you adjust to it and observe for any rare side effects.

REPOST

It may be that the longer you have had PD before starting Ambroxol, the longer it may take to observe a benefit from it cognitively and in slowing progression (it may be doing both, but how does one measure what they cannot experience happening - to the extent that those who have had PD for a longer time may report a decline (in their general health) &/or new symptoms more frequently, if the pace of those reports slow and one is remaining cognitively sharp, then that may point to Ambroxol. It may also be dose dependent, high or low, and how long you take it if your PD is more advanced, & if indeed you should ever stop taking it if you have PD. We will know more later next year when the current Ambroxol for PD dementia trial findings come out. In the meantime, given my 1 year+ experience with it, and as slowing and long term reversibility are critical for me, I plan to stay the course. For me it is mitigating the risk of PD dementia that is the #1 objective, and why Ambroxol is so important to me: "An estimated 50 to 80 percent of people with Parkinson’s will eventually experience Parkinson’s disease dementia. "

I look at it this way, it took literally years for my PD to ultimately show itself outwardly to me in my motor symptoms (the prodrome period), I for one don't think it is reasonable to believe that 6 months or even my 14 months is enough time to fully assess what Ambroxol can do or is doing for my PD long term, it could take years of taking Ambroxol (perhaps at an even a higher daily dose than I currently take of 600mg) to know that. I will say however that my lack of PD brain fog and much reduced freezing are major continuing benefits for me that show me that it's working every day, and I believe steering my clear of potential PD dementia down the road. So for me, stopping my Ambroxol treatment to slow my progression is simply not an option (not going down my grandmother's PD dementia road, it was simply horrible for her to end that way, and as a child horrible to watch).

I like what Andy F said in one of the links you cited, and one of the 1st Ambroxol trial participants in the completed UK trial reported on last year. Well before I had even heard of Ambroxol he said " I was a patient participant on the Royal Free Ambroxol drug trial. We are awaiting results of the study, an update is due in June. I should point out two things: Firstly that the trial was designed solely to determine if there is evidence for increased drug-related biochemical activity in the cerebro-spinal fluid and how this relates to drug-related blood serum activity levels, and secondly, the trial employed dosages of Ambroxol way above those used in the drug's current therapeutic usage range, currently this is about max 150mg/d, the trial dosage was almost 10x that. I don't have any further information to divulge, but if I could afford to, I would continue to take Ambroxol. "

[Juliegrace in reply to Hidden]

On your improved freezing: did you freeze while “ on” or “ off,” or both? How much improvement have you noticed?Thanks.

[Hidden]

When my freezing was at its worst, pre-Ambroxol, I was taking both Ropinorole & CL, and I don't really remember any particular correlation between on and off periods and my freezing in place for what seemed like a minute or more at the time (certainly long enough for my wife to ask what I was doing if she was nearby). I quit Ropinirole outright early last Fall at a fairly high dose due to some progressively bad side effects (let's call them exaggerated reality or hallucinations if you want), and have let Ambroxol and my CL regimen (only 1.5 25-100 tabs 2x daily, 1/2 my prescription) do the heavy lifting now for my movement symptoms. At about 15 months now on Ambroxol I freeze much less frequently, and when I start to it is much easier to mentally break freeze. From my perspective that's pretty improved (and really not noticeable to my family now), but it didn't happen overnight as you would expect, it wasn't until a few months after starting it and at my 600mg daily dose did I begin to realize that the freeze reduction was happening. That said, my mental clarity and reduction in my brain fog improved a lot within a couple of months. Hope that helps.

[bullet65]

I was a participant in the clinical trial in London Ontario. I was diagnosed with parkinsons approximately 10 years ago and am having more physical and neurological side effects. This has led me to try some of the supplements mentioned on this site. Having read the science behind the trial I had high hopes. I was in the trial for 12 months and then participated in a 6 month extension. I can not say weather I was on Ambroxol or placebo for the first 12 months but the 6 month extension I was guaranteed Ambroxol. The dosage was 1050 mg per day. With all the testing completed I showed no significant change in my condition. That was my personal experience but if you are using it and think it helps carry-on.