CL and dyskinesia

[Lmahaffey]

I have a family member who is petrified that he will get dyskinesia if he takes CL for a long time...so He has gradually stopped taking CL and is trying Azilect. Anyone have any words of wisdom for us?

[jaberalhddad]

healthunlocked.com/parkinso...

[Hikoi]

Azilect may work short term but its not a subsitute for carb/lev.

He is not alone in thinking that he can avoid dyskenesia by holding off taking carb/lev but that isnt really true. Lots of factors especially age influence how meds work. I dont understand this fear, where does it come from? I wonder what people imagine dyskenesia feels like.

The more he learns about the meds the better he will be at treating his condition but if a person chooses the avoid c/l route i would urge them to read up about it. Not on the pages that sell cures, of course they will bias info their way but on the sites of the PD orgs and research info MJ Fox etc.

[openbook]

If he can live; without i agree i wish i would have waited

[mishod]

I tried for several months. I am 44 so waiting was one recommendation but my shoulder and arm were so imparted that it hurt a lot, couldn't exercise and couldn't work. Now on Sinemet I can function almost normal. My md who is a top Stanford Neuro said delaying is not really saving you from anything just adding misery. There are new meds coming out to control the diskinesia.

[Jeansm in reply to mishod]

Same here. I refused to take meds for 6 months, but one freezing episode was enough to make me try them. I could barely function from rigidity and a variety of none motor symptoms until I started Sinemet. Now I'm back to 5 hours a week in the gym, vastly reduced anxiety, no exhaustion, and no apathy. I still refuse night time medication because I'm concerned of having nightmares so my sleep patterns are not good and I'm very stiff first thing.

[Bailey_Texas in reply to Jeansm]

I take my C/L 24 hours a day with little or no side effects. I wake up ready for the day.

I take 1 50/200 C/L ext release and 1 25 /100 every 3 hours 24 hours a day. and now i have no down time. I am 63 11 years with non tremor PD. At least try at night a few night mares will not hurt you they are only dreams.

[mishod in reply to Bailey_Texas]

Reading this gives me a lot of hope!!

[Jeansm in reply to Bailey_Texas]

maybe it's a sign that my anxiety perhaps isn't under control after all! I'll give it some thought. Thank you.

[NanCyclist in reply to Jeansm]

You might try 1/2 c/l at nighttime. If you have REM sleep behavior disorder, you might ask your doctor about using Clonazapam.

[Jeansm in reply to NanCyclist]

Thank you. Neurology appointment is this month. I'll add to my list of questions and suggestions.

[mishod in reply to mishod]

Also forgot to say I was all the time on Azilect. Azilect only did almost nothing to my motor symptoms. Since it's an antidepressant probably helped with anxiety and overall having better attitude. I tried mirapax also but again very little help on motor symptoms and really reckless thoughts.

[Johnmo]

I had fear of dyskinesia, the neurologist who confirmed I have Parkinson's told me I would be dancing in ten years and I started reading these messages. So I stopped the levodopa. On 8 mg ropinarol. Thought I was ok but starting to get nausea, jitters, non-motor feelings. Beginning to wonder how bad I was before and what if I went drug free. Scary tales about drug induced pd symptoms. Every case unique. Just going on gut feelings. Still on the gluten. 😜

[racerCP in reply to Johnmo]

Gluten has nothing to do with anything except for people who have celiac. I am on year 4 DX PD and take 1 and a half tabs c/l. The doctor prescribed 3 a day 25/125 but I still have trouble with dizzy and nausea

Working on it. Energy good and exercise.

[lempa_nik]

You might want to inform your family member that he can possibly reduce or even avoid dyskinesias alogether by using Mucuna Pruriens. Please refer to some remarkable research showing the anti-dyskinetic tendency of a water extract of Mucuna Pruriens powder in rats and in monkeys. The abstracts clearly explain the promising results and suggest that Mucuna may be markedly superior to Levodopa drugs (with or without added carbidopa or benserazide):

ncbi.nlm.nih.gov/pmc/articl... (A Water Extract of Mucuna pruriens Provides Long-Term Amelioration of Parkinsonism with Reduced Risk for Dyskinesias)

ncbi.nlm.nih.gov/pmc/articl... (The Antiparkinsonian and Antidyskinetic Mechanisms of Mucuna pruriens in the MPTP-Treated Nonhuman Primate)

[mishod in reply to lempa_nik]

Have you tried it or just citing other sources? I am wondering since I tried but I felt really bad from mocuna. Had little issues with sinemet though.

[lempa_nik in reply to mishod]

I take 7.2 gm of mucuna powder every day as part of balanced amino acid therapy. Never had any malaise as a result, except for a fleeting sensation of nausea the first time I tired it. I use D5 Mucuna (40% L-Dopa), which can only be ordered from CHK Nutrition by ones medical provider. You'll want to make sure your Mucuna is certifiably free of heavy metals and pesticides. All herbal products carry that risk. If your herbal product comes from China or India or a third world country, you'll want to be extra cautious.

[munchybunch in reply to lempa_nik]

How did you know how much to take? Everyone says you must be careful. Is that true?

[lempa_nik in reply to munchybunch]

Munchybunch, I received the mucuna pruriens (MP) originally from Alvin Stein, MD, one of the originators of the Hinz protocol. With urinary assays, and with telephone consults to discuss my symptoms, Dr. Stein prescribed my dosage of mucuna.

Since the medical people have regarded mucuna largely as a natural source of LD (Levodopa), a reasonable way to figure out the correct dosage is to calculate how much mucuna will give you an effectively equivalent amount of LD. But presumably you will omit the so-suspect carbidopa (CD), and according to Wikipedia without the CD, you will need 4 times more LD to get the same effect.

Example: regular seed or "endocarp" powder of mucuna (MPEP) contains about 4-5% LD. Suppose you want to replace one 100/25 Sinemet, which contains 100 mg of LD. The correct dose of MPEP is then 4 X (100 g/5% )= 4 X 2,000 mg = 8 grams. This is obviously just an educated guess. It is not unreasonable since I have gathered a typical dose of mucuna before the advent of CD was 30 grams, or about one ounce. The trouble with that large a dose was nausea and gastrointestinal upset. That's why CD was introduced.

A logical question: how well do our relatives, parkinsonian rhesus monkeys tolerate mucuna? MPEP has been used on them, with and w/o CD: ncbi.nlm.nih.gov/pmc/articl...

The monkeys used in the expt. differ from us in two ways: they don't wear pants, and they weighed only 6-9 kg or 13-20 lbs. They handled very well total daily doses of 3g, 6g, and 9g (given in two divided doses). I quote from the paper:

"No observable adverse events were evident at these doses of MPEP alone or MPEP+CD. Doses at 12 g/day and 18 g/day caused compliance issues and severe adverse effects with successful consumption. These included nausea, retching, vomiting, behavior that mimicked hallucinations, and increased aggression."

So, yes, there is a maximum desirable dose of mucuna, and if you exceed this dose, you'll become sick, maybe even temporarily psychotic (i.e., not become an ax-murderer, just see hallucinations.)

[munchybunch in reply to lempa_nik]

Thanks so much for the lengthy reply. My husband went to see the neuro today and he is just leaving him on Azilect and Pramipexole. No mention of Leva dopa so perhaps we can leave Mucuna for a while?? I wouldnt mention it to the neuro as I know he doesnt believe in natural remedies! Thanks again.

[Hikoi in reply to lempa_nik]

Dumpelkin

A general comment, concerning all research.

You mention 2 "significant" ways the monkey models differ from us.

The monkey models also differ from us in one other way. Monkeys do not get Parkinsons, so they have a drug induced Parkinson type condition. If a treatment intervention works on monkeys this is a good indicator that it could work on humans but not proof.

As i understand it, until the double blind human experiments are done we can not be certain that a treatment intervention will work in humans.

[lempa_nik in reply to Hikoi]

Hikoi, I'll take whatever I can get. Rats are better human analogs than fruit flies; monkeys are better than rats. In at least one respect--besides being much cheaper and faster living--monkeys are superior to human subjects: they don't muddy the waters with their own placebo effect, unlike us notorious ones.

[Lmahaffey in reply to lempa_nik]

Thank you. He does take mucuna puriens powder. I'm not sure the amount. He has some success with it.

[wifeofparky]

Does he see a Movement Disorder Specialist or a general neurologist? Has he discussed this with them? A frank discussion with your doc is really important before making any decision. Sinemet worked wonders for my husband. He also took selegiline. It was the perfect combo for him.

Hs general neuro just had him on Sinemet and never really answered my questions. He improved greatly after changing to his MDS.

[Lmahaffey in reply to wifeofparky]

He sees a regular neuro, but it seems like he is really in charge of his own treatment. lots of Internet research, and of course this blog. The Dr. Doesn't really do much.

[Lmahaffey in reply to wifeofparky]

I will suggest he see a MDS.

[Alistairs]

Well I am no expert but the neurologist told me that azilec is to eek out the dopamine supply so reducing symptoms later on in the cycle. HoWe've Sinemet or C/L as you call it is the gold standard for Parkinsons relief.

Yes the more you take I believe brings on symptoms you are taking about. I TAKE 6 X 25/100 a day, with varying degrees of success.

Without the Sinemet I am not going anywhere!

I am also informed that Parkinson,s is different for everyone.

Best regards

Alistair