Hi all. My dad has been diagnosed for 12 months and isn’t responsive to levodopa. Apparently only 10% of the population are not responsive to this drug. The one time it’s worse to be unique I guess? Has anyone encountered this issue and what avenues did you go down to find something that worked for you. Was it purely trial and error or is there something out there which is used for people specifically who don’t respond to levodopa. Can you help please. All responses are appreciated.
Parkinson’s affects everyone differently and there are no hard and fast rules when it comes to starting medication for Parkinson’s. In the case of your dad, I would recommend that you raise your concerns with his GP or Parkinson’s nurse so that they can look into his medication so that they can either increase his dosage or explore prescribing him a different type of Levodopa.
We have a lot of information on our website about Levodopa that may answer some of the questions you may have, also our head of Research Communications and Engagement, Claire Bale, has written a blog post answering the most frequently asked questions about Parkinson’s related medication. You can find both sources of information below:
Along with our members who I’m sure you’ll hear from shortly, please remember that you can always give our helpline a call and speak to one of our advisers for more support on this.
@DHP thanks for the response. So he has quite significant arm tremours to the point where he can’t hold a cup or carry a plate without spilling things (had to resort to a flask now). Have you had this symptom? I will be sure to take a look at the Ambroxol research you provided as I’m trying to get him into the habit of visiting the specialist with more background knowledge so he has the ability to challenge the doctors on certain topics if needs be as he has not been treated greatly over the past 12 months (very poor communication between our GP and the specialiast).
Hi, the research into Ambroxol looks very interesting. Please excuse my ignorance because I’m new to this, but is the suggestion that it might only be useful for a particular form of Parkinson’s? (single GBA gene mutation)
If so, how do people find out whether or not this type affects them?
DHP…your information is invaluable, and I thank you for it. One question that I have, is this…Since it appears from your account that Ambroxol is exhibiting evidence of repair work in the brain ( dare I suggest attacking amyloids of misfolded alpha syneucleon), what is your reasoning for maintaining your intake at the level you are now taking ? Why not take a further 500mg/day as the initial trial identified as a target study concentration?
excellent question, and I plan to do just that starting next week. I believe there is a trial now planned at the roughly 600mg daily level to see if it gives app the same result as the 1,100mg level trial just completed. Since I am my own trial (good for me!), I started myself out escalating to the 600mg level to see what that did for me. Well, it did good things. Will another 400 or 500mg do even more for me? that’s what I now plan to find out. I should have a clearer picture going up in dosage as to what it does for me than I would coming down, that was my reasoning at the time (that plus 600 mg a little more cost effective if it does app the same thing, & really not fond of taking 3 rounds of pills every day if I don’t have to, but I absolutely will if there is a gain to be had). So stay tuned. Thanks again for the question!
DHP - thank you for your very comprehensive reply.
I see from one of your previous posts on this subject that you also keep the syrup as a back up
I think that for many people, me included, the sheer number of tablets needed is off-putting.
Are there any particular reasons for not taking the syrup instead?
Jgo With DHPs exciting revelations, can you keep step with her through relaying what syrup manufacturer can reliably provide the high Ambroxol concentrations that can see us build up to 600mg/day, then, maybe as much as 1.2 g/day of ambroxol…naturally the fewer spoonfuls the better ? I’ve not taken medicine in syrup form before. Do amazon offer high concentrations ? A further note of caution to all readers…it is important to research what other Parkinson’s medications (which you may be taking) are NOT compatible with Ambroxol…eg ,as I gather, Rasagaline
Unfortunately I don’t have the answers to your questions but they are definitely things I will be looking into if the syrup looks viable as a way of taking a large enough quantity of the drug.
Yes, of course people have to be careful not to take something that might interfere with other medication and I would talk to my doctor before taking anything, but I’m not not currently on anything else.
I’m excited about this!!! thanks for posting.
I want to get Ambroxol but cant find it on Google. can you post a link to your supplier.
All the best,
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"
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. "……worth investigating this with your doctor?
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
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.
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
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?