Levodopa not working

An Ambroxol trial for its repurposing to PD recently completed meeting its objectives and with very promising other findings as well (you can find a link in my recent posts). That said, there are other trials planned or underway to validate these other findings, with one key trial completing I believe in late 2021. So if you have the time to wait until all the ducks are in a row - which I for one do not have given the progression of PD - then I believe sometime in 2022 the medical community will come in behind it in some form and your neurologist may recommend it. I say may since as there is little money in an old cough medicine for big pharma, they may still be promoting their patented treatments as opposed to a potential halt or cure prospect. My neurologist is presently indifferent to my taking Ambroxol, having at my request read the research and found it to be promising. I am starting my 7th month on it in August, with all favorable things to say about it to date in slowing my progression (except for the taste, that is still a bit harsh but I can live with it). As always, do your own due diligence on whether it is worth trying, and consult with your neurologist as needed. Really only you can make the call on Ambroxol at this moment, and as I suggested a key question for me was could I wait while my disease progressed. I for one, could not

Hi

Many thanks for your comprehensive reply, quite a lot to take in.

I feel my journey over the last seven years has been like a road journey that has become narrower and narrower , until I am standing on a cliff edge and need to make a decision, do I go over the edge or do I turn around and fight my way back.

Unfortunately the tools I have been given by the NHS have become blunt and I need to think outside the box to stand any chance of getting out of this mess.

What I need to know are three things.

  • If I start taking Ambroxol , does that mean I stop taking Madopar.
  • Do I understand I need to take 600mg ( 20/30mg tablets ), and is that once a day.
  • Approximately how much will that cost

I do hope this will improve my life as I am pretty well at a low at the moment with very little chance of improvement.

Best wishes

David

hi,
i still cant find it on Amazon but found some Ambroxol Siromed on ebay, sold by econera. is that you?
i bought some anyway
Thanks

Hi @davidmoldon
I’m glad to see that you’ve found the information in this post useful and interesting, drug re-purposing is one of the areas that Parkinson’s UK research is actively exploring, you can find out more here

With regard to your question “does that mean I stop taking Madopar”, do speak to your Parkinson’s clinic for advice before making any changes to your medication. We have advice on managing drug treatments here which advises the following…

  • Don’t stop taking or change the dose or timing of your Parkinson’s drugs until you have spoken to your health professional as this can increase your symptoms.
  • Do not stop taking your Parkinson’s medication unless your specialist or Parkinson’s nurse tells you to.

This is because changing or stopping some Parkinson’s medication suddenly can lead to serious long-term and sometimes irreversible side effects.

Warm regards,

David
Forum Moderation Team

Hi each ive been taking co careldopa 4 times a day for 4 months now still no response pd nurse on about increasing dose from 50m to 100m myself will try for a month if no response back to the drawing board

DHP…I wonder if you got any resolution as to whether Ambroxol is indeed incompatable with MAOB inhibitors, such as Rasagaline…Remember my Parkie’s Nurse said they should not be combined during treatment…Have you enquired further (about this) with your Neurologist ? Also, in reference to the trial in early 2020, the upper limit that was put to certain patients was, I think 1.26g/day…Any idea why that concentration was picked as the higher limit…What are the risks in taking, say 2gm/day…for example…and what, I wonder would be the symptoms one should look out for, that indicate you are taking too much of the drug?..You may not know, but I thought it worth a try…best wishes

I did ask my neurologist this week at my 4 month visit about the compatability of Rasagaline with Ambroxol, and he again reiterated he did not believe there were any concerns, but agreed to look into it again and let me know what he finds out if anything - willl post here anything of consequence when I know more.

As for how recent researchers established the trial dose, I have not seen anything yet directly on that, but did observe that it is something like 10× the normal daily dose when taken as a cough medicine. Perhaps they thought that was a good place to start, and I believe that dosage level may have been used in other trials for safety over the past many years it has been available. Unknown but ultimately knowable.

My left hand tremor was getting fairly significant and visible, and using the beta blocker 1-2× a day, Amantadine daily (+ supplements and CBD oil when needed), helps me control it fairly well (+ keeping up with my upper body arm exercises of course). But for me what is most hopeful, is that it actually appears to me now to be less than what it was and easier to control. Is that an Ambroxol impact (others for me I have already posted here)? I’ m not ready to say that yet, not until I see it continue for awhile. But I am very hopeful for once. As always, do your due diligence on the trial research and safety, and make your own decision on Ambroxol. I’ll just say for me it was an easy decision seeing where the progression was going to take me, and to date I have not been disappointed in it, not one bit.