When Sinemet , potentiated by a agonist that’s suitable, no longer works, what is next and how do you feel?

[Dromana]

Sinemet no longer giving results

[sharoncrayn]

The basic premise of PD pharmacology is that ultimately Sinemet (or its generic equivalents) loses its effectiveness even if the doses are increased dramatically from the original amount taken, or the daily frequency is dramatically increased. This loss of effectiveness varies by individual.

[JAS9]

I've read that when levodopa first came out, doctors were very careful not to give too much. If you got close to a dose they considered too high, they'd put you in hospital for a "drug holiday", which meant reducing your dose while being medically monitored. After that, the medicine began to be effective again.

I wasn't sure they still did this until I saw this blog by someone who recently went through it. It's pretty disturbing but worth looking at. He waited too long and was abusing his meds, so even after the reduction he still had some possibly permanent symptoms: outthinkingparkinsons.com/a...

[Dromana in reply to JAS9]

Coming down on Sinemet is what I need to do. Easy to say, but not so easy to do. I understand the distonia is from too much c/l is that correct?.

I’ve been confused I think.

I’ve been thinking too much c/l caused dyskinesia.

[JAS9 in reply to Dromana]

Yes, too much c/l causes dyskinesia. But dystonia can be the result of too much c/l, or caused by PD. If you haven't tried massages, sometimes they help a lot with dystonia, especially for feet.

PD symptoms and c/l side effects can be similar. If it's usually a light tremor, it's probably PD, but if it's a strong movement requiring muscle (spasms or strong "ticcing"), it's probably too much L-dopa.

[JAS9 in reply to Dromana]

I've reduced my c-l meds. I don't take Sinemet, I take Rytary, which is similar but time-released. I took it slow and am down about 17% from my peak amount. You shouldn't come down without some supervision and of course work with a doctor who's done it before. It took me months to reduce it this far, so days or weeks might be too fast. Slow and steady. But work with your md or specialist.

[JohnPepper]

I don't know whether it is too late to start doing exercise when you get to that stage, but it is worth trying. Visit my website - reverseparkinsons.net to see how to go about doing so,

[condor39]

Please give more information on doseage, and how long have you been on Sinemet?

[Dromana in reply to condor39]

Diagnosed Jan. 2015. London Neurologist started me on 5 tablets sinemet, 25/100m. , per day. At this time I had almost no symptoms. I have never developed tremor, except in feet at rest, sporadically .

I am now at 14 tablets per day, increased as symptoms increased. My current dosage is 7 ea. Sinemet 25/100 regular, and 7ea. Sinemet 25/100 Sa, spread evenly over day.

I just started ,taking 100 mg. Amantadine to extend “on” periods , three weeks ago.

Distonia getting worse each time and more frequently.

Your thoughts would be appreciated.

[JAS9 in reply to Dromana]

Has your neurologist ever spoken to you about a plan to reduce your meds to make them work better? Reducing dystonia seems very important to me. It seems as though it's time for a talk about all of your options. And if your neurologist doesn't think it's possible or "recommended", you might want to show them the blog I linked to before.

[Dromana in reply to JAS9]

I get your point exactly. I don’t navigate that well on this blog. Any way to give me more info on how to access the info. It’s clear I need some help, both on finding the page etc. and more importantly on managing the carbidopa/levodopa and the other meds to help.

[JAS9 in reply to Dromana]

Here's the important part of the blog I linked to you (written by Dr Gary Sharpe, Phd):

"Decades ago, it was part of the medical care of l-dopa supplementation to receive yearly "drug holidays", where the person with PD would be taken off the medicine while in a safe hospital environment. This would help reset the system and ameliorate the side-effects such as dyskinesia for some further time.

Indeed, the point that if I ever I was to get the drugs down to less toxic levels for me, here was my opportunity while in a safe and supported hospital environment with doctors and nurses around, which I would never be able to do safely at home on my own. Indeed, to re-iterate: I do not advise anyone try to rapidly reduce their PD drugs at home, on their own, or against their doctor's orders - it is very, very dangerous."

Dr Sharpe was in the hospital, on morphine, and was constantly monitored. He had been abusing his meds and so had been very overmedicated to the point that it was threatening his life. They reduced his C/L meds by half very quickly (2-3 weeks I think); much faster than you might be able to at home. If your doctor doesn't know how to do this, a specialist should be able to tell you more.