Ambroxol for PD

Hi all

This is a link to my vlog about the recent clinical trial of ambroxol for PD.

https://youtu.be/zbqcdxcNWCc

Cheers,

Ian

I have been taking Ambroxol since the trial results were published in January 2020, and I have to tell you, for me at least, it really works! Where it helps me most is in clearing and keeping out the brain fog experience I have with Parkinsons, and alleviating significant non-dominant left shoulder pain, but I also think that it has slowed its progression substantially. I currently take about twenty 30 mg tabs a day, a little more than half the trial dosage, split morning and evening (I believe there is a trial planned close to this dosage level as well). I certainly take a lot more than the box prescribes for dry cough, and have gone well beyond the 8-10 days recommended! Other than some initial stomach upset I had as I ramped up my use of it following the trial protocol, I have no side effects now except for the taste of it, which is a little harsh when taking ten at a time (I find a little dark chocolate addresses the aftertaste nicely!) For me, Ambroxol is now a must have medication for PD, right up there with Levedopa. My neurologist is aware, and told me had no objection to my taking it. If you want to try it, one place you can find it is on Amazon UK (I know, because I believe in it so much now I helped get it there - we shouldn’t and can’t wait for something that really works! again at least for me it does). If you have questions for me about it, just ask, I will answer all as best I can. This is me now stepping off my Ambroxol (it works!) soapbox (and based on the results of the trial, probably many of them feel the same majorly encouraged way I do).

Hi @DHP, :wave:

Welcome to the forum. :slightly_smiling_face:

I’m sure many of our members will find the information you’ve shared on Ambroxol very helpful; I thought you’d be interested to know that we covered the Ambroxol trial on our blog which you may want to read here: https://medium.com/parkinsons-uk/ambroxol-trial-results-explained-b96934ca53be

I’m glad you’ve been speaking to your neurologist, however, I would not advise that you go over your recommended dosage. Please feel free to explore the forum and contribute to any other threads that may be of interest to you.

Best wishes,
Reah
Forum Community Manager

Thank you so much Reah for the warm welcome, and I’m going to the blog link next! For members here to know about me, I’m a couple of years post 60 and was diagnosed with PD about 3 years ago (and my grandmother had it, thus the genetic connection). Presently I’m on all the traditional meds I’m sure most here are on (Levodopa, Ropinirole, Amantadine, etc), plus many supplements (N-Acetyl-L-tyrosine, Acetyl-L-carnitine, Avena Sativa to name a few that help me alot, if anyone wants my entire list I would be happy to post it here), have regularly used upwards of over 2 dozen Chinese herbs with some benefit (I can post these as well, just ask), have tried chiropractic & acupuncture treatments as well (a lot to say on those subjects as well if you want, just ask), and of course regular PD specific exercise (what I like best is a stand up boxing bag, it helps me the most). Like many, I have been pretty aggressive in trying to slow or stop its progression, and try to keep up with all the new meds possibly coming down the road, which is of course how I journeyed into Ambroxol. Now I know more research is underway to confirm the trial results for Ambroxol that to me are so stunningly promising, but it could be year or more off before we have those (& I would not expect big pharma to support it as there is no money in it for them, they are testing their own solutions with early results less promising to me than Ambroxol, that have much higher health risks than it does as well). A year is a long time to wait in the progression of PD, which is why I started taking Ambroxol now (I just wish I had it a year ago!), and for me at least it has really given me hope that I can hold this thing at bay permanently (along with everything else I’m doing of course), and long enough for something even better (& hopefully tastier) to come along.

Again, many thanks Reah for the welcome, hopefully this helps members understand a little bit more about where I’m coming from.

For members here, I looked back at what I noted as evidence of changes in me that have occurred since I started taking Ambroxol, and realized this morning that I missed a significant one. I have definitely noticed when showering that I have more control over my left hand, its beginning again to do pretty much what I’m telling it to do when raised to my head, like move its fingers in my hair like my right hand when rubbing in shampoo (a small change I know, but important to me nonetheless), or even how my left hand seems to work a little better on this keyboard (the trial results I believe also noted some motor control benefits - I’m looking for more of those to comet!). I also realized I wasn’t very clear on how I ramped up to the dosage I’m taking now. I pretty much followed the 6-month trial protocol that follows, stopping at 300 mg per dose with a 2x a day regimen a day not 3x (just easier for me, so I’m at 600 mg total a day, roughly 1/2 the final trial level - I have chosen to be more conservative, for now, as my neurologist knows): “60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28)…followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day)” - from JAMA neurology. Ambroxol boxes typically come in (20) or (30) 30mg tablet sizes, so I use 20 or 30 boxes a month now depending on the size. That should help better frame what works for me. Again, any questions, I’Il answer them as best I can.

I should have asked if any members here have tried Ambroxol for PD? If you have, could you share your experience to date? If you haven’t, is it because it lacks the final phase 3 trial evidence the medical community needs to move it forward or not for PD, or another reason entirely? Many thanks in advance!

1 Like

Would taking the syrup have the same effect?

Hi! I am newly diagnosed and a GBA carrier. I started the exact Ambroxol protocol as used in the study March 13th, 2020. DHP, when did you start noticing the effects? My main symptom is my right hand not working well.

Thank you!

If it is Ambroxol syrup, then I believe yes it would provided you were taking the equivalent in mg’s of the tablets similar to the trial. I actually have some of the syrup should I ever run out of the tablets, which has not happened as yet, and I’m trying to be sure that doesn’t happen ever for anyone who wants or needs it. Good question, thanks for asking, hope my answer and Ambroxol help you like they helped me at this stage of my PD.

I recall noticing the mobility change in my left hand about a month or two ago, which would have been about 4 months after I reached the maximum dose I am now taking. Are you taking the maximum dose as in the trial at this point?