Levodopa not working

My maternal grandmother had PD, and over the course of the last decade of her life I watched her slowly die from it as a kid (fewer medical options didn’t help her back then), never thinking that I would be the next in my family to have it. But here I am, with PD. So now my main goal in life is to not go that same way, and I am extremely motivated by her experience to try anything that could help. I have posted other things here that help me manage its symptoms, but only Ambroxol appears to be so far at least, doing a lot more than that, and should hopefully continue to do so. My view is that all with PD should know their new treatment options - proven fully or partially with trials onging - and to the extent it makes sense have them available to them now and not years from now if they may be unavailable until then; it should be their decision, not big pharma on the basis of what they are selling or planning too,or the medical community who understandably wants multiple trials to prove out before they commit to it. removed by admin as it is in-breach of forum rules.

DHP…Interested and grateful to you for sharing your thoughts on Ambroxol daily dose uplift. I have a thought…I wonder what you might do in the following scenario…If you have gone up from 600mg/day to 900 mg/day for the full period of the 3 months, and you see no material improvement, would you raise further your intake…If it were me, I think I’d only go above 900mg if i definitely saw some positive effect…I would also have the dilemma as to whether I’d be tempted to cut back to 600mg /day…I’m definitely excited to follow your experiences…doubtless, in the pursuit of good science, I take it you’ll not be varying any other medication intake over the course of your journey :blush:

I might raise it further just to know for certain, as I do believe it is safe at that level as well, but in all likelihood will make that call when I get there with your and others thoughts on this board, and yes, no plans to change any meds over the next 6 month period

Ambroxol sounds as if I should give it a go. Why is this not recommended by neurologists?

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

Ambroxol is definitely outside the current PD treatment box. That said, my neurologist has no problem with me taking it. Until recently I was taking 600mg per day, 300 at breakfast and 300 at dinner. I have posted here that its benefits to me were significant at the 600mg level over 6 months, hence the need for me to know more at the 900mg level closer to the trial dose. Removed by admin as it is in -breach of forum rules.

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.