8 years from dx I am suffering more fre quent bouts of dyskinesia which I cannot see any pattern for in relation to meds which are: 4 sinemet puls a day, Aalea t 1 mg per day and neuropatches 8 mg. My pd nurse gave me a monitor to wear for a week but a month on I have yet hear the conclusions if any from this. The sinemet is defo the culpret as unless anticipating exercise any increase in sinemet starts off dyskinesia which is g etting more pronounced and tiring so its not just me that notices. Once the unwanted movements start they persist regardless at what stage of medication I am. On the other hand I can go weeks without any appreciable dyskinesia.
All comments to shed light on this appreciaated
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paddyfields
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To the best of my knowledge, dyskinesia is caused by too much levodopa in the brain. By reducing the levodopa you will reduce the dyskinesia. But then you have to deal with the bradykinesia. It seams like a no-win situation.
I wish that I could promise you that what I have been doing will help you, but I can't. But what I do costs nothing so it is worth giving it a try. I have been medication-free for the past 15 years and live a normal life again.
Have a look at my profile, which tells you everything.
From my information diskinesia results from too much dopamine in the Brain. The other meds you take increase the dopamine in your brain. Discuss with your doctor for adjustments.
We keep being told that, as we are all different, we shouldn't recommend to others, things that work for us. With that proviso in mind, I have been experimenting with Mucuna Pruriens, due to the dyskinesias I KNOW are caused by Sinemet. ( Also observed by researchers when I was doing a clinical trial with them last month, off meds completely, then re-introduced Sinemet, hey presto, silly involuntary squirms!! ) So I asked to be changed from Sinemet 125mg to Sinemet 110mg ( the blue tablet with less Carbidopa). I use a pill cutter to cut it into 4 pieces, so I only take 25mg of levodopa x 3 daily instead of the "normal" 100mg. Alongside that, I take 1 Mucuna capsule x 3 daily, that's 40mg levodopa ( I use the "Now" Dopa capsule) That is usually enough, unless I'm going to be very active . Then I just add another quarter of my Sinemet tablet or another Now capsule, as I feel I need it. This regime has given me back control, isn't clock-dependant and seems not to have any side effects at all. It doesn't work for everyone. Another friend didn't find the Mucuna worked for her, so it's trial and error. But then, so is the prescription medication!!
Thanks sparkyparky I'll study your very useful post later but I thought you have reminded me that I have info.about carbidopa being the real culprit and that C/L has become by A SHIFT IN LANGUAGE BECOME SYNONMOUS WITH LEVODOPA ALONE EVEN IN RESEARCH PROJECTS (excuse caps.). Sinemet 110 therefore sounds promising but how receptive my PD nurse or neuro are to my suggesting such adjustments on the strength of postings such as yours even backed up with the research when I find it. I've never heard of this blue pill/sinemet before. Is it commonly used ? The article in question said that the 25/100 mix was the only one available, meaning that plain levodopa couldn't be had from big pharma Up til now I haven't needed to tinker with meds.as I have reacted well to whatever has been suggested except for "half-Sinemet" (conytinuous release) tried for leg aches artnight which I found useless.
It identifies carbidopa as the cause of dyskinesias which they say did not exist prior to 1975 when FDA approved carbidopa for concomitant administration with l/dopa
Paddyfields, try and find a supporting article / research by other than Hinz or Stein to back up their claim. They seem to be the only ones really. Its unlikely your neuro will be persuaded by them i suspect.
This early study shows 50%. of patients got involuntary movements after only 2 months in the days before carbidopa was added. All got nausea. It is a fascinating read pub 1969 and contradicts the Hinz claim.
There is some very suggestive evidence that a dopa decarboxylase inhibitor (DDCI), when combined with Levodopa (LD), *causes* or, at least, *greatly exacerbates* dyskinesias. In this rat model given in link at bottom, LD by itself (in the form of Mucuna Pruriens) did not produce dyskinesias (except at extremely high doses.) And, wonderfully enough, Mucuna Pruriens can even counteract dyskinesia (see Expt. 5, below.)
For the DDCI they used Benserazide (BZ) i.e., a drug similar to Carbidopa, and which is also commonly used in Parkinson medicines. As a source of LD they either used synthetic LD or a water extract of Mucuna Pruriens (MPE).
In what follows, we focus on the misleadingly named "Dopa-Induced-Dyskinesia" or DID. From theIr abstract of 5 experiments with the parkinsonian rats, I condense out the more relevant results (the asterisks are my emphasis):
Expt. 1, LD+BZ or MPE+BZ -- alleviation of parkinsonism, but *with severe dose-dependent DID.*
a) LD+BZ at low doses, no significant alleviation of parkinsonism. In contrast,
b) MPE+BZ at an equivalent low dose significantly ameliorated parkinsonism.
Expt. 2, MPE *alone* alleviated parkinsonism with *significantly less DID* compared to LD+BZ or MPE+BZ.
Expt. 5, MPE *alone* reduced the severity of DID in animals initially primed with LD+BZ.
(Comment: I wondered why there were any dyskinesias at all in Expt 2. But here, the dose was extremely high-- two-three times greater than the "high" dose used Expt. 1. This indicates that at high enough dose, MPE can induce dyskinesias, even without any added DDCI.)
It has been 2 years plus one week. Each time, I take the AA meds, I return to near normalcy, i.e., my tremors go away . . . for about 2 heavenly hours. But I shy away from taking the AA meds, because: a) it's a bit more elaborate than popping a few pills--there's also weighing out powders and mixing them with applesauce, and b) this 10-15 minute routine gets old after a while. So lately, I've tended to slack off and take the meds less than 3 times per day as I originally proposed to do. (Of course, if I really wanted to eliminate "OFF time" completely, I would have to take the meds about 8 times per day--yikes, no way!) So, yes, the Hinz protocol seems to work well. Since all the ingredients are natural, I do not ever have to worry about drug interactions. As usual, diet wise, I do have to avoid proteins synchronous with meds. The disease may still progress slowly, but I believe (knock on wood!) there will be fewer nasty surprises down the road.
As you say, at $500 per month (my average cost), it's not cheap, and will be out of reach for many. But Harleybob08 of this forum once reported that it was costing him 100 (british pounds ?) per month, which is way cheaper. So if a person mobilizes their creativity, it looks like they can wrangle the Hinz protocol--or a close simulacrum thereof--at a bearable price.
If the Hinz protocol is too much trouble or too costly, at least I think it is tremendously worthwhile to see if one can replace synthetic levodopa drugs -- in part or whole -- with mucuna.
2nd attempt.Thanks Hikoi. It should have read as "apparently irreversible" dyskinesias but I did not use the edit facility properly.
They also mentioned adequate B6 as counteracting the Carbidopa efffect
Also I have just stopped having B12 injections as my blood levels were very high even just before the injection due the last two times B12 tested at my request . When I started them 4 years ago my B12 level was very low in spite of taking a MV whic h included 5 times the daily requirement(and includes 3 times the requirement for B6). Significant view of the fact that B12 deficiency can mimic PD?
Must say I have never heard this differentiation between permanent and temporary dskynesia. It seems rather odd, and i would be interested to know how they differentiate, and the implications.
I have just been searching for comments/responses to Hinz papers and Im having trouble finding anything. There must be something out there! I read that to date he has co authored 18 papers with Stein.
Paddyfields, re "counteracting the Carbidopa" w/ B6,
"Levodopa (L-dopa)-- Vitamin B6 reduces the effectiveness of levodopa, a medication used to treat Parkinson's disease. However, your doctor may be able to determine a dose of B6 that can help reduce side effects of levodopa without interfering with the drug's action. Taking vitamin B6 along with levodopa should be done only under the strict guidance of a physician."
To avoid cancelling out the efficacy of Carbidopa, the Vitamin B6 should probably be taken several hours before/after Sinemet. But check with your neuro. Also, according to Hinz et al, carbidopa and B6 bind in a 1-to-1 ratio. This suggests that if your C/L pill contains N mg of Carbidopa, you'll want to take a comparable amount of B6 (assuming, for simplicity, 100% bioavailability of both compounds.)
Thanks Dumpelkin. I'm starting a separate file for any info.on this subject as it strikes me as basic info.when deciding on medication from now on. My present "over 70's"multivitamin gives 4.2 mg B6 which is said to be equal to 3 times the RDA according to my inf. which may be somewhat out of date as I don't think they use the expression,Recommended Daily Intake now.
I see my neuro every twelve months for less than 10 minutes and the PD nurse in between. I wore a monitor weeks ago, have heard nothing since now and am getting rather impatient with the lack of action since I first said the dyskinesia was distressing on the days when it persists all day. I said to the neuro long ago that I had read once dyskinesia becomes established it is harder to treat. He said no but my instinct tells me otherwise.
I shall soon be turning from a "no bother" patient (my default position) to a somewhat different character
//The PD nurse has a "answer your message within 5 working days" system which discourages you as last time they didn't get back at all. I am willing to take responsibility but I am not in the slightest bit medically or scientifically qualified as far as management of PD is concerned and as someone said elsewhere, neuros seem more interested in their pet research than anything so lowly as management . I feel a rant coming on which I'll spare anyone reading this. What would we do without sites like this where we can marshal our thoughts and clear our heads for a while.
Neuros divide into two kinds: clinicians and researchers, Researchers may see patients on the side, but obviously have limited interest in that since research is what gives them their "dopamine buzz" A clinician, who has nothing to do but see patients, is likely to be more attentive. You should seek out the latter.
My doc for Amino Acid therapy, who has extensive experience with live patients (as contrasted with imperfect book knowledge) just told me that his patients take megadoses of pyridoxal (P5P, the most bioavailable form of B6) -- up to (but NOT TO EXCEED) 600 mg of it (I assume that is a daily dose.) This is in accord with the philosophy of Hinz et al that PD patients who were on a steady regimen of Carbidopa (via Sinemet) need megadoses of B6 (for 6 months or more) to replenish the stores in the body. I myself have been taking 200 mg per day for almost two years without yet contracting any neuropathy--the primary concern from megadoses of that vitamin.
I’m confused. Read in this Forum a month or more ago to take B Complex. Should I stop. Am having days where my Madopar doesn’t work as well as the day before.
I was having increased dyskenesias so my neurologist had me see a movement specialist. He just had me take the same medications , Stalevo and Mirapex. But he changed mg /day and amounts /day. It worked! My neurologist thinks I should see this other specialist occasionally and as needed.
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A clinician, who has nothing to do but see patients, is likely to be more attentive. You should seek out the latter.
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