How much CL is too much?: Hi all. I had a... - Cure Parkinson's

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How much CL is too much?

jeeves19 profile image

Hi all. I had a phone appointment with my nurse yesterday. I told her that I was having severe off times and needed a revised regime. She noted that I was on 8mg of Requip and proposed increasing this to 14mg (Fine by me, I never had the bad side effects that this drug can bring). Then she asks me how much Madopar I take. I own up that Mucuna as well and then she does a calculation on her notepad. She announces that the Madopar and Mucuna aggregate to 600mg of levadopa which is the 'top end'. She tells me that the neurologists don't like to prescribe more than 600mg. I'm surprised and disappointed. This works for me pretty well and enables me to cycle, play musical instruments, walk properly etc very fluently. Today I took about 300mg and felt pretty handicapped and rather miserable. Whilst I'm waiting to titrate up to the 14mg of Requip which should make a difference, I feel quite down about being told that 600mg is the upper limit and wonder if the community would concur or challenge this

57 Replies

It's maybe a bit of a muddle. Madopar combines Benserazide with levadopa. Benserazide is a DDCI like carbidopa. In simple terms 100mg Madopar is equivalent to 500mg levadopa in macuna

if you are mixing Madopar and Macuna and just talking ldopa quantities you are adding apples to pears

The "top end" for Madopar is usually 800mg BUT your neurologist will know best and take account of all your treatment combined. Adding requip usually allows the madopar dose to be reduced

That said - adding the ldopa in macuna to the ldopa in madopar is meaningless - adding apples to pears (or if you prefer taking dilute lemon squash as the same as the concentrate)

Which ldopa makes up the 300 mg?

Madopar. Thanks for getting involved Winnie.

Hikoi profile image
Hikoi in reply to jeeves19

Never heard it so low! To start I dont believe there is an upper limit, that I would suggest is an opinion and the personal preference of that neuro. If you go to Glasgow for eg where my friends neuro doesnt prescribe agonists I’m sure that neuro would respond very differently. Perhaps it is your age and they are trying to keep you off levadopa otherwise I dont understand.

I would be trying to keep l dopa under about 1200mg but my neuro says you need as much as you need?

jeeves19 profile image
jeeves19 in reply to Hikoi

Yes, that would make sense to me Hikoi. Thanks for stopping by. Good to hear from you.

Somic67 profile image
Somic67 in reply to jeeves19

in 2015 i was on 800/1000 mg L/C day (no other meds) and in a few months i was rapidly degenerating (loosing legs control, having heavy off time, shorter meds duration, urgency to urinate, loosing sfintere control - involuntary farting - head bobbing, an so on).

I had to stop (drug holiday - i told you something) and reduce by half to recover.

Levodopa is very dangerous and addictive, especially at high dose.

jeeves19 profile image
jeeves19 in reply to Somic67

But our symptoms surely demands the relief that it brings? We are degenerating without the help of the meds. The meds aren’t causing this.

in reply to jeeves19

How has the dyskinesia been?

Im a bit confused tho. If she signed off on 600 (leaving aside whether that would be universally accepted or not), why did you only take 300? Im confused (its probably me, btw, im constantly confused lol).

jeeves19 profile image
jeeves19 in reply to

The dyskinesia calmed down thanks. Don’t know why. I take 300 mg of Madopar and then augment this with some Mucuna. She wasn’t sure how to measure the amount but I suggested that the Mucuna dose gave me the same relief as 2 Madopar so she assessed it accordingly.

Masterka profile image
Masterka in reply to Somic67

How did you reduce it.

Somic67 profile image
Somic67 in reply to Masterka

I just stopped taking it but it was a nightmare and a lot of pain and Off time on the bed. Can't be done alone, help is needed.

healthunlocked.com/parkinso....

"I take 2400 mg of carbidopa/levodopa every day. Dose anyone here take close to that amount...8 doses a day every 3 hours 1 50/200 ext r and 1 25/100 per dose "

Hi PB, yes that was my standard dose for the last 14 months. 300 mg L-dopa every three hours starting at 0500. Yep every three hours even in the middle of the night. Also took one Selegiline 5 mg at 0800 and 1400 hours. Sinemet one 50/200 ER and one 25/100 CR

Three weeks ago started taking Ongentys (opicapon) a COMT inhibitor. One 50 mg capsule at bedtime. I also take Gocoveri one 137 mg capsule at bedtime. Neuro told me to stop Selegiline

When I ran out of gas I would go from 60 mph to a dead stop on seconds. No more. Oh don't wa3 to forget down to 200 mg L-dopa 8X/day

Most nights I sleep right through my 0200 hours dose!!

Blimey! Do you have dyskinesia as a result yet?

Hi jeeves!

The last six months dyskenesia and Gait & Balance were gradually getting worse. Also my Sinemet dose was wasn't giving me the on time I was used to.

At my last appt in Oct, he prescribed Ongentys a COMT inhibitor. It was FDA approved in April. I don't like trying any new meds. It's so easy to get your med regimen out of wack. I was getting noticeably worse and the ball was in my court.

Long story short, my L-dopa daily dose is now 1600 mg, down from 2400. I still have dyskenesia. Feel Gocovri will fix this.

BTW, I'm getting 3+ hours between doses. I haven't had one episode of shutting down abruptly. Sleeping is much improved, in fact I've slept to 4 AM a couple times. Normal sleep for me is 3 hours max.

First time taking COMT inhibitor. I was on Selegiline forever, just stopped taking it

Good luck jeeves, have a smashing day!

Yes jeeves at times quite a lot. The Gocovri I'm hoping will take care of the dyskenesia. The dyskenesia dosage is two 137 mg capsule at bedtime. I had problems (postural hypotension) at that dose so my Neuro cut me back to one. I'll swap out a little dizzyness for a contortion free day.

Besides I don't drink alcohol anymore. I get the same effect from just standing up.

So what’s Gocovri? Is it new and is it’s purpose to suppress dyskinesia? They say that B1 is pretty good by the way for it. Good luck with it anyway 😊

pdpatient profile image
pdpatient in reply to jeeves19

Hi Jeeves, Gocovri is the long acting/aka extended release version of Amantadine.

I asked my MDS for a trial. He demurred saying that it would only worsen my dyskinesia.

Parkinson's is a very complex condition. A blanket statement cannot be made about the symptom relieving effects of a particular medication. What works for you will not necessarily work for me and even if it does, it may not have the same effect.

To give you a sense of how much of effort goes into treating a patient with specificity, consider this. .My doctor prescribed me Amantadine instead. Go figure😅.

I have given up arguing with or trying to convince him to do otherwise if I have a preference. He is usually the one who is eventually right anyways. Plus he spent 15 years studying and honing his craft and my insurance pays him $1000 a visit😆 Might as well make him work for it.

You are lucky where you are with free medic care.

jeeves19 profile image
jeeves19 in reply to pdpatient

Sort of, but the wheels have certainly come off recently with bloody Covid. Many medical services just seem to have called it a day. Even cancer patients aren’t being treated and suicide rates are soaring due to poor mental health. I believe that one day the world will reflect with discomfort the folly of its hysteria towards this virus?

pdpatient profile image
pdpatient in reply to jeeves19

Jeeves, I strongly believe that it's a weaponized virus that was released from the government bioweapons lab in Wuhan, China. I hope that with Trump out of office, the nefarious shenanigans that went on with the virus outbreak will be revealed.

Think about it for a few minutes. It's a declared bioweapons lab, set up in the very place where it was "released accidentally" and has characteristics that we don't see in other similar viruses. Sinister still is the fact that the virus is best controlled in China where it originated. I believe that it's probably a test run to figure out how the world would respond and the Chinese government took great precautions to ensure that national leaders of major countries would not be affected badly. Science fiction, you would think. Maybe it's a highly developed and sophisticated bioveapon that has targeted delivery capabilities.

None of the powerful leaders died. Bolsanaro, Johnson or Trump. All of them obese and in the high risk category. They all recovered faster than the common patient.

Neither the UK nor the USA did anyone to China. If the same kind of circumstances applied to a middle eastern country, what are the odds that country would have been immediately accused of being the culprit and then bombed to kingdom come? 110%!!

Meanwhile, we Parkinson's patients along with the other chronically afflicted with other ailments have to suffer as a result with diminished care as you just pointed out.

RoyProp profile image
RoyProp in reply to pdpatient

I agree with you. China did a test run. How it affected our military was keenly observed by China generals and admirals.

Pa-zzi69 profile image
Pa-zzi69 in reply to park_bear

Naturopath Dr. Laurie Mischley claims that the CR [extended release] version of C/L has a 75% absorption rate which, if I'm not mistaken, scales 50/200 to 50/150, for a total of 2000mg [from 2400mg] for your regimen.

PB,

In my area, max daily dose amount = 150C + 1,500L regardless of frequency. So, six doses of 25/250 would be a max.

Just a question of interest, how long have you been on this dose level and did you neuro prescribe it?

Sharon

That dosage is not mine. I was quoting Bailey_Texas at the link.

FYI, PDR says 2,000 is max over 16 hours via enteral suspension plus a night time dose of IR. So, I would assume 2,250-2,400 is acceptable orally.

RoyProp profile image
RoyProp in reply to sharoncrayn

My dose level was prescribed myself. I fought two neurologists. Two 25/100mg IR every four hours, 24 hours.

Search YouTube for Dr Fahn. His limit is 2000mg.

Pa-zzi69 profile image
Pa-zzi69 in reply to RoyProp

Thanks for the lead, RoyProp !

Thanks Roy

These people although professionals haven't got the condition so they couldn't begin to imagine what having off times are like especially if your active it's debilitating I'm not saying ignore them I'm saying do what's best for you

I take 800mg per day

jeeves19 profile image
jeeves19 in reply to Bron60

How long have you been on this dose and how long have you had PD? Thanks

RoyProp profile image
RoyProp in reply to Bron60

How long have you been on this dose and how long have you had PD? Thanks

Max 600mg levadopa seems low , John takes. Stelevo 125mg x6 and slow release sinemet 200mg during the night x2 . As far as I’m ( we) are concerned, medication/exercise/ diet are things that need to be tweaked as and when necessary, not to a strict regimen, and you should have the flexibility to try and find what works for you 😀

jeeves19 profile image
jeeves19 in reply to ruff1

Thanks Christine. Hope John’s doing ok 👍

ruff1 profile image
ruff1 in reply to jeeves19

Yes had a few sleeping issues but been prescribed melatonin which has really helped along with slow release sinemet during the night . He’s not impressed the golf clubs are closed though 😂😂

i believe 1400mg/dAY is max for sinemet.....hope that helps.

I’m sorry you’re having problems Jeeves. I was surprised when I read your post too, because I thought people were on much higher doses of CL, But I know you’re taking other meds too.

Do you think it would be worth trying to switch off the mucuna, then increasing the CL accordingly? Just wondering if it’s not having as much impact, but I’m not sure why I think that. It just popped into my head. But I pass it on!

Also, here I would probably talk to a pharmacist. He or she could check the possible interactions for you to confirm with the nurse is saying. It sounds like maybe you’re at the point where you need to be dealing with the neurologist themselves rather than the nurse. Nothing against the nurse but it’s tricky stuff.

For you: good heavens!😀

Seriously I hope you get it straightened out and I’m sorry that you’re going through this. I hate this disease and its progressions.

jeeves19 profile image
jeeves19 in reply to Godiv

For you: some English exclamatories that would be unusual in the US ( unless you tell me otherwise 🤔).

Crikey

Goodness Gracious

Gordon Bennett

Oh I Say!

Enjoy 😊

Godiv profile image
Godiv in reply to jeeves19

No, you are spot on! 😀 I love these, thank you.

Jolly good. Is that one still used?

Here’s a funny one from the south in the United States I believe. You’re talking about doing something successfully: For example, all we have to do is get together, talk about it, and… “Bob’s your uncle.“ Not a very good example, but anyway thank you so much for my linguistic lesson. These are great!

As I say this I am leaning on the bonnet of my vehicle ...😀

jeeves19 profile image
jeeves19 in reply to Godiv

Ha. Yes, I forgot Jolly Good and one wonders where Bob and Gordon come from?!

Godiv profile image
Godiv in reply to jeeves19

How funny! It's of British origin and apparently there's also a "And Fanny is your aunt." From the Interwebs:

This expression is mainly used in Britain. It is often used immediately after a set of simple instructions and roughly means the same as '... and it's as simple as that!'

In 1887, British Prime Minister Robert Gascoyne-Cecil appointed his nephew Arthur James Balfour as Minister for Ireland. The phrase 'Bob's your uncle' was coined when Arthur referred to the Prime Minister as 'Uncle Bob'. Apparently, it's very simple to become a minister when Bob's your uncle!

‘How do I get to your house?’

‘Take the first turn on the right, walk about 50 meters and Bob’s your uncle.’

jeeves19 profile image
jeeves19 in reply to Godiv

Great stuff! But I can honestly say that I’ve never once heard anybody use the Fanny is your Aunt line 🤔

I take Rytary and supplement with C/L for off periods. My Neuro says 195 mg (levodopa in) Rytary = 100 mg levodopa in C/L. [Rytary has more but is time released.). Based on that calculation, I am taking approx. 650-700 mg a day, which is low compared to other people I know who see him or other Neuros. I vaguely recall reading somewhere that above 600 mg was the point dyskinesia can start. I'm not sure that's true and you have to also calculate dopamine agonists. 14 mg Requip sounds high to me. As I recall you are not in the US? I'm on 4 mg Neupro and believe top US dose is 8 or 10 mg. Personally feel there are more side effects from dopamine agonists than C/L. My thoughts.

jeeves19 profile image
jeeves19 in reply to PDGal4

Thanks. I think agonists have their drawbacks but I think they’re far less prone in promoting dyskinesia than CL. I’ve never had any of the obsessions that some complain of with them. But then again I don’t know how much punch they pack now that I’m starting my 6th year. I think her thinking is that I take more of these and will consequently be able to take a lower CL dose. Time will tell. I appreciate your input 😊

RoyProp profile image
RoyProp in reply to PDGal4

25/100 IR Single dose max is three and a half tablets. Then you take as many doses required in day and nite that keeps you on. Dy skinesia only results from the last single dose. Not the day total.

Hi, I take 800 mg l/c, so above what your nurse wanted you on. I am also 6 years in. I got off the Azilect (Rasagiline). I had some improvements after this but since I have also noticed shorter “on” time? So I am in a bit of a transition. I am trying to only change one thing at a time, so I can feel the difference. Right at this time, I am on the Wahl’s Protocol and I want to give the diet a true test so I am committed to 6 months before I can report anything. Anyway, good luck on your journey!

jeeves19 profile image
jeeves19 in reply to PalmSprings

Thanks. Good to hear from you. How’s that neuropathy? Mines not too bad as long as I suck on a B12 lozenge each day. I only take one Gabapentin which I take at night and it helps with sleep I think 🤔. Anyway, hope you get the president you wish for!

RoyProp profile image
RoyProp in reply to PalmSprings

Please do "report" your experience

Thanks! My neuropathy is under control and my new diet seems to help. My tremor, stiffness and pain are my new enemy, ha! Cheers

jeeves19 profile image
jeeves19 in reply to PalmSprings

I forgot to add: I’m going to check in in a few months re. the Whals. I believe in it and her but haven’t the balls to do it. When I first got dxed I did keto for about 2 months but didn’t get and symptom relief. I’m I. Two minds re. Diet and PD so I hope you can change my mind. Good luck!

"Don't like to" doesn't mean "will not" or "should not," and is really just a general starting point anyway about large groups and before getting into actual clinical experience of the individual patient. Getting down to the individual patient is definitely supposed to progressively replace or inform and substitute for the initial general group starting point. Like saying "most cars are internal combustion," or "most passenger transport vehicles are cars." When you show up in a pickup truck or a bus, or an electric vehicle or on a motorcycle, or a bicycle, then the thinking obviously starts increasing correctness and decreasing included error by moving to the better informed experience that modifies the original, but easily flawed or easily excepted, initial generalization, because it is now very obviously wrong in your case. You see how it works.

Especially taking into account individual cases, so work with the prescriber about that. They always have to start with the broad brush strokes until they find out what is appropriate in the individual case, and that is supposed to be what clinical" means anyway, so have that conversation, always remembering to catch comments that steer about some large hypothetical group and ask to bring it down to the individual case, YOUR individual case, because they have to start somewhere and yet also shed prejudices as they get more actual information about your case and response etc. So it's good to have that point made frequently. FREQUENTLY.

If you’re trying to extend your on times, why would you want to increase you CL dose? I would think you would want to look for ways to extend such as switching to Rytary or extended Sinemet adding amantadine or something. Also, FYI I think mannitol is helping my husband with his on times, but he is not tremor dominant.

Neither am I. Thanks for the suggestion

If you do try mannitol, let us know how it works for you! We keep having to reduce his Rytary dose since starting mannitol a couple of months ago, so it is actually really difficult to get the dosing right with him.

Theory...Levodopa is active for two hours. After which your body is free of levodopa resulting low risk of dyskinesia.

One takes 100mg per dose. 8 doses per day. Or

One takes 400mg per dose 2 doses per day.

Each provide 800mg total per day.

Your risk of dyskinesia is lower at 100mg per dose while maintaining the same high dose day. Multiple low dose protocol allows higher daily levodopa.

Reference: Mayo Clinic. “Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease”

J. Eric Ahlskog, PhD, MD

Note: 25/100 IR Single dose max is three and a half tablets. Then you take as many doses required in day and nite that keeps you on. Dyskinesia only results from the last single dose. Not the day total.

jeeves19 profile image
jeeves19 in reply to RoyProp

Cheers Roy. I think that the problem with frequent dosing is the clashes with food?

RoyProp profile image
RoyProp in reply to jeeves19

Yes and My current neurologist prefers frequent.

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