Levodopa not working

DHP, from my observation, the available syrup alternatives do not provide Ambroxol in attractively high concentration, for the purpose that we, with PD are ‘wanting’ to utilise/investigate the chemical…thus, as you say, large volumes of fluid would require consumption, and the 30mg pill option to me seems best choice…I note, DHP, that you recently post that, when having taken the days first 300mg of the drug, presumably upon waking, you rapidly note evident positive result, including clarity of thinking…looking back at earlier posts, It strikes me that it took exposure to at least your current daily intake of the full 600mg/day before you noticed your first undeniable positive experience…is that correct? can you confirm /clarify exactly what stage of the trial you first noticed Ambroxol to be working?. I am wondering if you may have felt benefit in outcome as you stepped up through 120-200mg consumption shifts, for example . Thank you for your posting and for getting Amazon on side.

Probably should have kept a daily journal, then I could have traced back my personal observations with more certainty, but I would say yes, it was not until somewhere in months 2-3 at my full daily 600mg that I really became conscious of the brain fog lift, and after that the shoulder pain dissipation, and then some left hand motor improvement in app month 4, which is continuing (as I now notice my keyboard use improvement).

Interestingly found this tonight posted we think from a prior PD Ambroxol trial participant, who if so probably has an NDA and can’t publicly share any more than this quote, but it is quite telling and for me believable: " I was a patient participant on the Royal Free Ambroxol drug trial…if I could afford to, I would continue to take Ambroxol"

https://healthunlocked.com/parkinsonsmovement/posts/137654985/is-anyone-taking-ambroxol-please-share

Also, I’m on Rasagaline, when my neurologist gave me the green light to try Ambroxol he knew that (he put me on it of course), he didn’t mention any compatibility issue there, also did a brief search tonight and couldn’t find anything, not aware of any concern in their interaction (?).

DHP,…yes… I thought, given the number of additional pills and supplements that you are taking…that you might also be on an MAO B-inhibitor, and that is why I raised my comment. I can offer nothing more to the reasoning behind this comment, except I quote from a parkinson’s nurse whom I approached, and she responded …" I have looked into Ambroxol in our drug formulary and it can be dangerous when taken alongside some PD Meds especially Rasagiline, Safinamide, Selegeline. "…:unamused:…worth investigating this with your doctor?

DHP,

I had a feeling that the volume of syrup needed might be the issue, so I if the tablets can be chewed they sound like the better option.
As to flavour, personally I don’t think you can go wrong with lemon or mint.
Thanks for all the information-I shall definitely be giving Ambroxol serious consideration.

DHP, Greetings again; Can I ask how you plan to monitor and increase your intake of Ambroxol. I wondered if you might be increasing intake by 200mg/month, or similar, and somehow quantifying any observed improvement in capabilty/speed/mood?. Perhaps you havn’t thought of being so prescriptive in recording any symptom improvement…but I, for one, am most interested in your action and its results

I do like the mint idea! plan to look into it as well as lemon, many thanks

DHP, I was wondering as to the financial arrangement that you have with the French company supplying amazon with Ambroxol. .i trust this wouldn’t sway your reporting of its impact on improving symptoms :wink::blush:

This upcoming weekend will roughly end 6 months for me of taking Ambroxol, with improvement noted in cognitive clarity, reduced left shoulder / bicep area nerve pain, and some left hand motor improvement (believe some related gain in control over my left hand tremor). Plan to add an additional dose of 300mg at lunchtime (a 3rd strip of 10 pills, which will then account for a complete 3 strip box or 900mg over the course of the day). My thinking is to continue that level for the next 3 months, observing for additional improvement in any of those areas, but in particular motor, less freezing and ability to break freeze more easily. I will post any observed changes here over the next 3 months. At month 10-12, now thinking to add an additional 300mg to see what that does. Also looking into any PD motor self assessment tests I can take, but my 4 month neurologist visits may be the best gauge for that.

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. To that end we have made it available on Amazon now as best we can, with the hope we can do much better over time for the PD community, myself included, as others report their successes with using it and momentum grows for it. But our mission goes beyond it as well, and to anything repositioned for use against PD. All that is to say that my reporting will be as it really is for me, and in the end should I believe be consistent with others reporting on it over time.

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

not on ebay at the moment as Amazon also handles fulfillment for us, did you search Amazon UK from an address in the UK?

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. As for cost, we are roughly 4 pounds for 600mg, but you should do your own due diligence on what’s out there and find the price/quality/service solution that works best for you. I sincerely hope things improve for you too.