We have some Kinson tablets which can be cut up . The madopar 62.5 are too strong. What would happen if hubby took madopar capsule less frequently with a tiny piece of Kinson in between?
We also have NOW MP and mucuna bean powder but I don’t know how much of those is equivalent to half a madopar 62.5.
I suggest you contact NOW and find out the % of L-Dopa in their MP extract. I would estimate around 10% but that’s just a guess. Once you know the actual percentage you can compute an equivalent dose. But IMHO your husband will still need some Carbidopa to push the MP dose past the BBB. I use 1/2 of a C/L 25/100 just for that purpose, and it seems to work pretty well. Good luck and I hope this helps - JG
It does say it’s 15% but I’m not sure how much will be utilised as you say it doesn’t have carbidopa and it’s not a drug we can get access to by itself. Our problem is madopar 62.5 we have is in capsules can’t be divided and even one is too much for him. We do have some old Kinson tablets from a couple of years ago that he couldn’t tolerate then but I think now that might have been because they were 100 /25 l/c and too strong. I’m not sure if they can be alternated with madopar.
Can the same carbidopa be “stretched” to accomodate more levodopa from mucuna?
You can break the 25/100’s in half and try that. But if they’re 2 years old it’s probably time to renew that Rx. Here in the US there’s an app called Good Rx that offers discount coupons which make C/L very affordable. I don’t know if you have that in NZ. I know nothing about Madopar, never used it. Best - JG
Hi no it’s all government funded but you have to take what is on their list. You can’t go and buy anything yourself without a doctors prescription and they can only prescribe what is on the list for the purposes it is there for as far as I am aware.
He stopped taking the Kinson as they made him sick so we have no prescription for it . Problem is getting into a Parkinson’s specialist to prescribe it. Our gp might but we just saw a gerontology doctor who put him on the long life madopar which isn’t working, and gp is reluctant to change anything a specialist has prescribed.
I use mucuna. I alternate a dose of madopar 25/ 100 in the morning with a dose of mucuna from british supplements afternoon, then again madopar and then again mucuna before sleep. Prescribed by my neurologist. Green tea helps the mucuna to cross the blood brain barrier.
Thanks.
pd alchemy! alive and well. practice makes perfect. i agree with reedboat about the BBB. hang tough.
LAJ it is common in NZ to be prescribed sinemet and madopar,( my neuro said it was OK to take both) so I cant see any contra indication to madopar and kinson. Ask a chemist if still unsure.You say the gerontologist put husband on long acting madopar. That doesnt come in 62.5, that is the immediate relief caps.
I suspect husband needs more madopar not less, i find I dont get enough to turn me on so I take 2 x62.5 to get me going.
He had sinemet when he first went onto it then it changed with no warning to Kinson. We didn’t realise until he started reacting to it. Then he was on madopar 62.5 until he was having problems getting out of bed in the night to pee so they put him on the slow release which is stronger but spread out more. It is this slow release he is having terrible time with it. I can plot his symptoms against the graph I found showing blood plasma levels.
At the peak he gets so rigid he can’t use his hands as they go into claws. It is clearly way too much. At the trough before the next dose is due he is too low and begins to shake and freeze. The first dose of the day isn’t so bad as he starts from a zero base but if he takes the second at 4 hours when he is starting to freeze the next peak is even worse as it’s building from a higher base of the tail of the previous dose. And each dose for the day is worse until at night he is going up the walls.
Yesterday we went back to the original 62.5 faster release and he was a bit better for much of the day but still a mess yesterday evening as rigid as a board, couldn’t even go to the toilet by himself as hands were claw like and not functioning from the last dose’s peak.
But he woke up feeling better for being off the slow release ones. He only ended up taking the 3 x 62.5 yesterday at 8, 11.30 and 5 plus 1 mucuna between the 2nd and 3rd dose but it was still too much.
Today we are trying to add some mucuna earlier in the day when natural levels are low so he doesn’t get such a trough between doses and space the 62.5 a bit further out. So far today he has been ok but the crunch time starts about 7 pm.
Yes, seems like he needs to get away from the delayed release and go back to regular Sinemet IR. I take one 25/100 every 6 hours with no adverse effects.
I’m not sure if madopar or is similar absorption time to sinemet but he seems to have burned through it all in 3 1/2 hrs, yet if he then doesn’t wait another half an hour his next peak is disabling. I am going to ask if he can go back to sinemet now it is available again. He doesn’t seem to tolerate madopar very well now. At least I can cut it in quarters and he can take it every 2 - 2 1/2 hours.
Sinemet sounds like a good idea to me. Your options with madopar seem to be fairly limited.
I've come across a document that lists the madopar options available in NZ . See link (PDF).
62.5 mg, 125 mg or 250 mg capsules
62.5 mg Rapid tablet (dispersible tablet)
125 mg HBS capsule (controlled release capsule)
So it seems that the only madopar tablet available in NZ is a single-scored 62.5 IR dispersible, so I think that is the one you would have to get a prescription for, and then cut it in half to try out your idea.
medsafe.govt.nz/Consumers/c...
Yes, we can try both maybe. I assume you can switch from one to the other with no problems? We are going to the psychiatrist tomorrow due to the suicidal thoughts so they can prescribe too, I assume they can prescribe these not just psychiatric drugs? I might see if they can prescribe a trial of say 10 days of each to see which works best.
LAJ your Gp can prescribe sinemet. Yes it is much the same as madopar but different manufacturers. It is generally quicker on and off but not significant. Can you tell me again the age and year diagnosed for your husband? Have you done much reading on non motor symptoms of PD?
He was 58, 4 years ago. He was doing really well until before Xmas then suddenly deteriorated. Yes I have done lots of reading on all aspects. . What in particular were you referring to?
We can go back to gp but as we are already booked for tomorrow for the psychiatrist I thought we would see if he can prescribe them too. Otherwise it will be a bit of a wait for an appointment and the gp isn't very knowledgeable about PD so no advantage seeing him again.
LAJHe is still young and early days with PD! I don’t understand what is causing all these problems if he is only 4 years diagnosed. I do think that using mucuna with c/l is confusing.. personally I would get stabilised on my meds then transition to some mucuna if i still wanted to.
Some thoughts:
Azilect has just been introduced into NZ and this is a long acting MAOB inhibitor. I have recently started it and find it smooths out my off ons. They haven’t gone completely but not as dramatic. If he is started on antidepressants azilect may be contra indicated (especially in US literature) but that didnt stop neuros in GB prescribing both and no problems.
Kinson was given for a few months when there was a world wide shortage of sinemet. It was publicised through PNZ but you probably wouldnt know if you are not attached to a PD organisation
The half life of levadopa is 60-90 mins. This means it will be peaking about then, then start falling off so many people need meds every 2-3 hours.
Being underdosed can look like overdose and vice versa. I agree with what more than one professionals has told you - he is underdosed. I have experience of this and until i take enough meds i can not get on top of it, so all day I feel trapped in my body. It is no way to live and would lead to suicidal thoughts.
Amantidine is helpful too.
I dont believe people who say we know more than doctors when it comes to PD. (They show their lack of knowledge in their posts) More than some doctors yes but a good neuro has a wide experience of many pwp and can give valuable advice.
I’d stop the long acting levadopa. As to the non motor symptoms I’ll save that for another post.
I think the problem us the nurse talked him into taking the medication when he didn't actually need it for movement for the stiffness. Since then the rigidity has become much worse and peaks at 90-120 minutes after taking each dose which seems to indicate that it is too much rather than not enough? He has tried both the long acting and rapid without mp and is just as bad, and much worse on the long acting. It actually doesn't provide any relief .
The only time he feels ok is when he first wakes up and until 90 minutes after his first dose of the day.
I tried joining the PD society in chch but the nurse could never be contacted. He wouldn't go to the men's events and I tried the women partner get together but it was all elderly women more than 20 years older than me mostly with husbands in rest homes and no children at home so it was not much use to me.
I wish they would spend some time and have him under observation from late afternoon to 11 at night and try things until they get him stable but they prescribe then no follow up and no ability to get advice quickly so we are left to fend for ourselves.
For example I sent desperate text to nurse last Wednesday that he is suicidal on meds. What do we do. I'm fighting him to stop him escaping to kill himself . She had said contact her any time and she books appt for tomorrow. Today her secretary rang to cancel and no new appt booked.
We were supposed to see specialist a few weeks ago and when we turned up he wasn't there, just a nurse who keeps trying to increase his dose. She doesn't listen. Then just as we are about to get another appt for different specialist the one that we have waited for since last May and last saw 2 years ago has claimed him as his patient so he says the new person can't see him, but he can't see him either! We would have preferred a different one but werent given a choice. Hubby would rather see anyone than wait for one who is already running a year late
Oh, dear...i thought it was only Ireland that we had these waiting problems...i resourced to see a neurologist online then passed the diagnose and prescription to my gp. If it was for the health system here id be waiting 3 years with no specialist care....fortunately my online neuro is knowledgeable of both mucuna and L/c...could you access someone like that? May help...
I don’t know, how do you contact one? Can they help with out seeing you?
He saw me on camera plus i explained all my symptoms. You can google neurologist online. There are some there. Read their bio and see their speciality.
Thanks. I will have to see if they are able to prescribe in NZ
Im sure you can find some from your area
We made mucuna powder no bake cookie balls and they worked well for supporting dopamine. Let me know if you want the recipe for them.
LAJ(I wrote a reply 36 hours ago but I cant find it now)
Believe me I understand your frustration very well. If you want to join PNZ you can contact head office in Wellington. If you are on facebook you can join NZParkinsonfriends. It is a private group with exclusively NZ members so you may find some support there.
I hope you got some satisfaction with the Psychiatrist.
Ok thanks. I think the one he joined is MS and Parkinson’s Canterbury. Is this a different one? It was the one the first nurse linked u,s too.
Hi LAJ, I hope things settle down for you two soon. I don’t know if you are aware but Braintree is opening in a month or so in Papanui, this is a purpose built holistic centre for people with neurological diseases such as PD. Here is their link canterburybraincollective.org/ . We haven’t bothered with the neurologist for 5 years or so, but we will give Braintree a go when it opens and see what it has to offer. Best wishes.
Losing hope
Sinemet shortage and change to Kinson
