Going off C/L

[Mjm012]

I am on another PD forum and I often see posts about people stopping their C/L and “feeling so much better”. They say their tremors are still with them, but in general they have more energy and general sense of well-being. Anyone have any experience with this as an option?

[ConnieD]

Can you share which forum? Are they replacing cd/ld with Mucuna ?

[Mjm012 in reply to ConnieD]

It’s called “Life with Parkinson’s”. It’s a Facebook group.

[MissRita in reply to Mjm012]

Thx!

[Hidden]

C/L greatly increases the quality of my life... In fact, when I am properly dosed, I can barely tell that I have PD (nor can others). It is a beautiful thing! And I am very thankful for it...

[ElliotGreen]

I will say this: if you come off of levodopa medication, it is better to taper, and reduce the dosage slowly. Coming off all at once and staying off can be dangerous.

"If you suddenly stop taking levodopa and carbidopa, you could develop a serious syndrome that causes fever, rigid muscles, unusual body movements, and confusion. Your doctor will probably decrease your dose gradually."

You might just try reducing it in the first instance.

[JAS9 in reply to ElliotGreen]

Yes, very true. Those who haven't been on high doses for very long might get away with the cold-turkey approach, but I've read stories about others who've cut too drastically or too quickly, and some have actually died or gone into full-on addiction behavior. Obviously, none of us can give advice about doses of prescribed medicine, so before you do any reducing, please consult your doctor. But I will say this: be careful and do it very, very slowly (over months not weeks or days).

[ElliotGreen in reply to JAS9]

Something to add:

It is my understanding that it is okay to take short breaks, like the one day drug 'holiday' that GaryTorch described today.

healthunlocked.com/parkinso...

Doctors also sometimes want to know how you are doing in an unmedicated state. That's fine too.

If you want to make long-term changes, go slow! This will help you avoid serious consequences described above.

Janice Walton-Hadlock also shares the serious consequences of abrupt dopamine withdrawal in her free online book Once Upon a Pill. I'm going from memory here, but I believe that she said the the dopamine withdrawal syndrome may not hit you for certain number of days. Please check the book, it's been a long time since I've looked at her stuff. But she was tracking quite a number of people very closely.

pdrecovery.org/once-upon-a-...

I am not a doctor, nor do I have direct experience with levodopa medication. Please speak to your doctor and do your own research before you make changes to your drug regimen.

[JAS9]

Typically, PWP are put on C/L within a few years of diagnosis. There is a "honeymoon" of about 4-10 years in which C/L enhances quality of life because it's supplementing the dopamine in the brain. As PD progresses, doses are increased. However, it's not that simple. In a non-PD brain, dopamine is limited to certain areas and in fairly small, regulated amounts. When we take our C/L meds, L-dopa (and therefore dopamine) floods the brain, even the parts of it that wouldn't normally get much or any at all. Over the years, and as the doses increase, a threshold will be reached. Some parts of the brain receive more than they can handle and then the problems such as dyskinesia and "on" and "off" and "freezing" get worse and worse. Here's a link to an extreme case of this: outthinkingparkinsons.com/a...

Those who don't go this route and reduce their C/L meds might be able to reverse the worst of these symptoms, but some say that some of the symptoms are permanent and due to brain damage caused by the C/L meds. I've reduced my C/L dose by 17% over the past (almost) 3 months because I was beginning to notice some of these symptoms and wanted to get ahead of the curve. It hasn't been easy, and because I wasn't experiencing full-on C/L caused symptoms, it's been tempting to go back to the higher dose, but I compare my relatively mild tremor, muscle rigidity, etc to what it could become at higher C/L doses, and I think it's a good trade-off.

Many PWP don't think about what's coming and many MDs and neurologists are happy to just push the pills. If one kind of PD pill stops working or causes problems, they'll be happy to prescribe some other pill to try to fix it. This and other forums are full of questions about whether this or that med will fix the dyskinesia, etc, but that seems like plugging holes in a dam to me. Even if you plug one, the water keeps rising and more holes begin leaking. Much better to lower the pressure.

[PDGal4 in reply to JAS9]

Pic you don’t mind my asking, what meds and dosages have you reduced from and to what.

[JAS9 in reply to PDGal4]

I was taking Rytary 61.25/245 mg 6 times daily (every 4 hours even at night).

I'm now taking one less capsule, so 5 daily. Doing the math...

Began: 1470 mg of L-dopa

Now: 1225 mg

Rytary isn't equivalent to most other C/L meds in that a smaller % of the L-dopa makes its way to the brain. The rough estimate is 0.7 to 1, so the equivalent would be:

Began: 1029 mg

Now: 857.5 mg

[ElliotGreen in reply to JAS9]

Is Rytary better in your opinion? I have thought that if I go on, I would like something that is sustained-release.

[JAS9 in reply to ElliotGreen]

It's good, but I don't know if it's better, since it's the only L-dopa med I've ever been able to tolerate. Before it was available, I went 7 years without any L-dopa. Sinemet and others made me feel terrible.

But I have no real complaints with Rytary other than it can be expensive.

[Hidden]

Hi JAS9, I am not aware of any evidence that taking a sub-optimal dose of C/L slows the progression of the disease. Are you?

[Mjm012 in reply to Hidden]

No. Just wondering because some patients said they felt less fatigue and more energy after titrating down on C/L.

[JAS9 in reply to Mjm012]

If they were experiencing dyskinesia, off periods, dystonia, etc, and by reducing their dose they reduced or eliminated that, they would very likely feel that way. But if not, then I don't get it. I have less energy than I did at the higher dose, though I'm still able to walk 2 miles a day. I had begun noticing brief periods of dyskinesia which is the reason that I reduced my dose. As I see it, if I hadn't, I would not have been able to exercise at all soon. Maybe that's what these people were talking about?

[parkie13 in reply to Hidden]

No, but you can get dyskinesia.

[JAS9 in reply to Hidden]

I am aware that living with dyskinesia can make it very difficult to exercise, which takes away the most important tool to slow PD. That's why I reduced; to continue to exercise, even though it's a bit harder than it once was it's easier than trying to exercise with dyskinesai and dystonia going on.

[Juliegrace]

After 6 months on a low daily dose of c/l (dyskinesia started at four months), I titrated off over a five week period. Prior to starting c/l I had been slow, but mostly functional. Within three months off c/l I was about 75% debilitated. It was awful. I stayed off meds for 10 months. I couldn't dress myself, brush my teeth, could not walk very far unassisted. I started back on c/l and within three weeks was almost fully functional. I have never felt tired or fatigued from c/l. Maybe the people who are affected that way are the ones who feel better off of it. I keep my dose as low as possible but I can't function without it.

[Mjm012 in reply to Juliegrace]

Good to know. Thank you for your input.

[Despe in reply to Juliegrace]

Julie, would you say 300-350mg of levodopa is a low dose, most of it from MP? Thank you.

[Juliegrace in reply to Despe]

If that is per day, then yes, IMO it’s a low dose.

[Despe in reply to Juliegrace]

OK, thank you! That is my husband's daily Levodopa intake with 37.5 mg of carbidopa.

[TL500 in reply to Despe]

what is it compared to 100/25? for Kinson it's Levadopar/carbidopar I think? Thanks

[Despe in reply to TL500]

TL,

My husband takes Mucuna Pruriens with 1/2 tablet of just carbidopa to enhance absorption of Mucuna.