fascinating case study on Ambroxol reported last year on a patient with Gaucher’s disease (important finding as there is a relationship between GBA1 mutations, Gaucher disease and Parkinson disease)
Interesting new research finding on Ambroxol for COVID from the April 23rd issue of the Journal of Biological Chemistry.:
"Ambroxol is a safe drug that has been used clinically since 1979, at least in Germany. It has almost no side effects. In addition, inhalation is a very safe method of treatment in general very often avoiding systemic side effects. Thus, our data justify further studies to investigate whether ambroxol can be clinically used to prevent or treat infections with SARS-CoV-2."
Hi @DHP
Just wanted to say how much I appreciate all the time and effort you have put into the Ambroxol issue and sharing that on this forum. Since starting on a low dose a couple of weeks ago, I am sure there is a noticeable difference in my husband ‘s functioning already…mostly his clarity of thought and speech. A long long way to go , but if it were not happening I would not be so surprised/ Shocked/delighted when it does. My only concern at the moment is the cost of the significant dosage that he will eventually be on, but in a way it is the least of our issues and if taking Ambroxol means thàt he has a better quality of life then it is worth every penny.
Best wishes, Pippa
so glad for him, great to hear about his improvements in clarity, exactly what Ambroxol did for me first (& still does!), many thanks for the follow-up note!
I have been taking Ambroxol since October last year,building up to 600 mg per day.
I am of course pleased if it is having a positive affect for others, but I have to honest and say that it doesn’t seem to be working for me.
How do you prove any slowing of progression because it is impossible to know how things would have changed without the Ambroxol?
Anyway good old PD definitely seems to be winning at the moment!
Do I increase the dosage or do I concede? A decision to be made…
Sorry to sound so negative but it’s been one of those days.
DHP, my fingers have a mind of their own today! Having a more positive day and I agree with what you say about persevering.
In the absence of a more promising, available alternative and being in the fortunate position of being able to afford it, I’ve decided to up the dose and carry on.
I was only diagnosed in September last year and have managed so far to escape brain fog and freezing, so hopefully the Ambroxol will help keep it that way.
Dave, would you comment as to why you have not increased Ambroxol uptake to 1.26mg/day as per trial study…Would it be that you have seen no improvement in functionality etc on 900mg/ day? If anyone else is trialing Ambroxol, without cocktails of alternative medicines…and have seen irrefutable improvement, please share. I have reduced Ambroxol intake to a trickle, partly through failing to find other people singing its praise…on top of noticing myself that my condition was worsening despite taking 600mg/day Ambroxol for circa 4 months
To be honest I am not sure…my sense is that it has but his condition is so variable from day to day and all his other meds have so many side effects (about to be reviewed and hopefully reduced) that it feels a little like a battleground in his body between warring drugs.
I have been wondering what made you decide to stop at 600mg per day? Will be speaking to the neurologist about it but am feeling rather pessimistic about the possibility of any significant improvements, but maybe it takes longer than I hoped and over time things will change for the better. It has only been about 6 weeks so far of a steadily increasing dose - now at same as you.
regards,
Pippa
Would recommend starting your due diligence with the two trials of Ambroxol for PD, one completed with findings published early last year and one in progress completing at the end of this year, links below.
yes, for me its #1 benefit is mental clarity and elimination of my PD brain fog (hopefully helping me avoid PD dementia down the road which is so common for us, and which my grandmother had and ultimately passed from), but it has also helped manage my PD shoulder nerve pain, reduced my freezing, and helped some movements as well as importantly keep my meds low…all of which to me means slowing my progression. We should know a lot more next year when the current trial findings are published, but in my case given its safety profile and impact on my cognition, there was no way I was going to wait and potentially get worse in the meantime. I did discuss it with my neurologist, as anyone thinking of taking it should, and he is fine with it (although he didn’t know much about it at the time, but does now).
Just discovered a new research article (link below) published on ‘Enhancing the Activity of Glucocerebrosidase as a Treatment for Parkinson Disease’ in July 2020 (which I had to rent to read it all) with this Ambroxol comment in it: “Among the class of small chaperones, ambroxol is one of the most promising candidates as a disease-modifying treatment in PD.” It also references the Ambroxol for PD trial completed last year: “The study confirmed that ambroxol is able to penetrate CSF and is well tolerated in patients with PD (even at 10 times higher dose and longer duration of administration than specified in its license)… with a significant improvement in motor symptoms severity”.
Much emphasis has been put on that pre-Covid trial whereby approx 17 people with PD took 1.26g/day of Ambroxol , for, I think , 6+ months, and saw a resultant increase on glucoceribrosidase, and, I think, an arguable directly associated reduction in the misfolded protein clumps…alpha synuclein…( NB…that fact needs checking) Like so many, I became extremely excited at the news, and expected to find that multiple individuals would promptly move up to taking 1.26 grams/day…and that , in event of ongoing irrefutably observed motor function improvement….it seems logical that one or two folk would even take higher dosages( this being our human nature)
I would like, given that we are all incurring high acquisition costs, securing the tablets…to invite anyone taking regular 900mg/ day …or more…to give their accounts on whether they are noticing any improvement in their quality of life which they inarguably assign to Ambroxol. I have not seen anything in this forum that has been written first hand by someone replicating the trial dosage of 1.26g/day , .sadly, it strikes me too, that there has been no article or response…by any of the specific 17 individuals who were on that pre-Covid trial…how wonderful it would be to hear from them.? There has been much written by DHP, …but I ask / invite all other takers of high concentration Ambroxol…to come forward with their history and account
This is such an difficult area - most of the other medication that my OH is on has the side effect of causing confusion, drowsiness etc (and how much of that is pushed under the “dementia” umbrella when it is in fact an avoidable side effect I don’t know) - I have tried to address that with his neurologist, but to put it bluntly he was not really interested - despite an excellent specialist nurse (employed privately to supply Apomorphine) who suggested a shift to Sinemet from Stalevo. He didn’t know much about Ambroxol and left the ball firmly in my court as to how to proceed with it - which is perfectly understandable. So the issue for me is separating out the effects of Ambroxol from anything else, which is pretty much impossible. I am certainly not confident that the professionals involved with my OH, such as they are, really know much more than I have been able to find out about any of it. Am going to try and get a second opinion re other meds and am very frustrated at the postcode lottery of NHS service quality, esp when it affects an irreversible condition which could be delayed or improved. It sometimes feels like their attitude is one of " oh well, he’s going to get worse anyway, so it doesn’t really matter what we do and when he gets worse we can blame the condition rather than ourselves". Cynical maybe - but what reason to believe otherwise?
But - there has been a definite improvement in my OH’s mental state - which other people have commented on, and at a very simple, emotional (mine) level, that is good enough for me to continue with it. …the sense that he can think more clearly, can articulate coherent and relevant thoughts, is more aware of his surroundings and what it going on, rather than being stuck in his own world - not all the time obviously - but when he can he can. Possibly his motor skills have improved too but both they and his mental state remain so variable that it is difficult to tell and hard to grade them in such a way as to be able to compare this week with last week/month. I had to a large extent given up on having him “back” - but I now get more than the occasional glimpse of the “old” him - which is priceless as I am sure you can imagine.
yes, that is absolutely priceless, very glad for you both that the “old” him is reappearing at times! The positive changes you note in thinking and articulating his thoughts are what I expect the 2nd trial results to highlight when they come out next year (as well as motor improvements over more time), and are my experience as well. Thank you for taking the time to share this with us Pippa, I personally think you’re doing great at caring and being an advocate for your OH, as it will make all the difference for him.
PS, it was my wife who first found Ambroxol for me as well!
