Ambroxol experience?

[felixned]

Is anybody taking Ambroxol and if so is there any symptomatic improvement? I understand Ambroxol is available as over-the-counter medication in Europe. There are clinical trials going on and some clinics in Israel use it in treating Parkinson's.

[park_bear]

looks very promising: scienceofparkinsons.com/201...

[Rijk99]

I started taking Ambroxol at the end of January 2020. I am following the University College of London trial protocol, titrating up to 1.23 grams/day in about a week' time from now. I would love to hear from others who either participated in the UCL trial themselves or are doing the same as me. Also, I would really like to hear about these clinics in Israel who are using Ambroxol to treat Parkinsons already. Do you have any update? Best regards and have a great day!

[Parkinsonjisung in reply to Rijk99]

Is that not costing you a fortune? It's a lot of pills to take

[Rijk99 in reply to Parkinsonjisung]

Ambroxol based medications are available in many countries, including Mexico, Taiwan, and most Eu countries. In the Eu, I believe it is about 10 Euro for a 20 pack of 75mg tablets. Given that 1.23 grams/day is equivalent ~17 pills which is equivalent to ~8.5 Euro's, you would be looking at a monthly cost of about 250 Euros. Not cheap, but doable. On the other hand, if you live or travel to Taiwan or Mexico, the costs are significantly lower. One wrinkle is that in some locations only 30mg tablets appear to be available, which requires you to take ~41 tablets/day if you are at the 1.23 grams/day dose. This is not so much fun.

[Parkinsonjisung in reply to Rijk99]

Thanks for detailed response. 250e a month is quite a lot for a drug that may or may not have any efficiency. Best of luck though. Out of interest, do you know if you have the gba gene?

[Rijk99 in reply to Parkinsonjisung]

I expect to get genetic testing soon (next month or two) to determine if I have one of the known mutations of the GBA gene believed to give increased likelihood of PD, but at this time I do not have that information. I mainly want that info for my children's sake, but as far as Ambroxol goes the literature seems (in my non-expert opinion) to indicate efficacy for both sporadic PD and PD due to GBA mutations.

[Parkinsonjisung in reply to Rijk99]

Ya. The trial results suggested that but the numbers were really small. The science behind it suggests it would be more suitable to gba carriers but our knowledge of parkinson is still all theoretical so maybe it works for both. Or none at all. I hope it works for you!

[Rijk99 in reply to Parkinsonjisung]

You make a good point. I think the UCL trial size, methodology, and objectives pretty much prevent any conclusions of efficacy being drawn. It could be the case that taking Ambroxol will ultimately prove to be a waste of time and money.

Nonetheless, I liked Jonathan Silverstein's comment in one of his various youtube interviews that this was something that you as a person with Parkinson's may be able to do yourself. I do not like the fact that at our present pace we may be 20 years away from a disease modifying treatment. But you can bet that if Ambroxol works for me, then I will be telling others, and maybe in some small way help to speed the adoption of a treatment. That is the dream, at least...

BTW, one question for you: You said "the numbers were really small". What numbers were you talking about?

[Parkinsonjisung in reply to Rijk99]

I was referring to the number of patients in the trial. I like your optimistic yet realistic approach. 😃

[Rijk99 in reply to Parkinsonjisung]

Yes, I thought it was unfortunate that the UCL trial involved so few participants. It is not clear to me what drove the decision to do an uncontrolled and not randomized small trial. It could have been budget limitations, government regulations, caution over possible side effects, etc. It would definitely be interesting to know.

[Despe in reply to Rijk99]

Is it about 3 tsps a day?

[Despe in reply to Rijk99]

There is the syrup form which I am referring to. I believe 1.23 grams of liquid is approximately 3 tsps.

[Rijk99 in reply to Despe]

Despe, unfortunately I have no experience with the syrup. My comments only are relevant for the pill form of Ambroxol. I believe the University College London trial used pills, probably with 75mg Ambroxol per pill. It would be good to re-read the January 13 JAMA Neurology article and study that more closely.

[Despe in reply to Rijk99]

Thank you! Not available in any type, shape or form in the US!!! I asked my sister to send me Ambroxol from home (Europe. . .) as it is not a prescription med. Our pharmacist there had the liquid form (which is better for gut and absorption), but it came in a 200ml bottle. Each dose is 30mg/5ml and my husband takes it three times a day. It's too soon to reach any conclusion, but he has stopped trying to clear his throat and his voice is not hoarse any more. Placebo??

[Rijk99 in reply to Despe]

Despe, happy to hear it at least helps to clear your husband's throat. And who knows, every little bit may help ...

[jenzoe in reply to Rijk99]

I am also following the 1260 mg a day. I am at almost 3 months at full dosage. I do have the GBA mutation. It was a 6 month study and they saw the increase in Glucocerebredaise (sp)

[felixned in reply to jenzoe]

Thanks. Any improvement of PD symptoms?

[LaurelStreet in reply to felixned]

No but i bet it takes a bit. I barely have PD symptoms. Ambroxol is really well studied.

[LaurelStreet in reply to LaurelStreet]

Apparently I have two usernames. Same person as jenzoe.

[Rijk99 in reply to jenzoe]

Jenzoe/LaurelStreet , Out of curiosity, how did you get confirmation that you have the GBA gene. Were you involved in one of the genetic testing trials? I signed up for three, took two (one delayed by study organizers due to CoVID-19), but have yet to see results back from any of the two blood samples given.

[jenzoe in reply to Rijk99]

We are Jewish and when I was pregnant with my now 14yo, my husband and I both got the Jewish genetic blood panels done. We are both Gaucher carriers (N370s) and out son has both copies.

[Rijk99 in reply to jenzoe]

Jenzoe/LaurelStreet: Thanks for the feedback on your genetic testing... and I hope and pray that your son is doing well and stays healthy.