Carbidopa / Levodopa Patient Views

Extra carbidopa (Lodosyn) can help. I can't tolerate an effective amount of levodopa but adding the extra Carbidopa helped for a while.

Changed my life and helped me understand the breadth of my symptoms. I am happy that it is easy for me to take and I do not have problems with it. Still the main treatment for PD and so important. Don't wait to try it.

My MDS directed me to use this as a rescue medication only. Inhaling powder is about as pleasant as that sounds… Spoiler: not pleasant. it does work pretty quickly but for me it wears off really quickly as well. Might give me 30 to 45 minutes on time which can be a bridge if you have to run an errand and not fully on and need to drive. Also, there are failed doses from the mechanism of the inhaler. Sometimes the capsule does not get pierced correctly or gets a little crushed in my experience.

So far, I have had a very good experience with Carbidopa/Levodopa. I was diagnosed in the spring of 2018, and my dosage has not changed since then. So that’s some six years without a change. I attribute that as much consistent exercise as anything else that is directly under my control. I am fortunate not to have clear swings between on and off but it is also clear that failure to take the medication over a long time brings back tremors. So from that perspective, this has been very effective in my case.

Carbidopa/Levodopa AKA: "Sinemet", doesn't only relieve the tremor that most observers see. Carbidopa/Levodopa and the many iterations of this drug is also useful in treating the many other symptoms that the brain's dopamine shortage of dopamine produces. Constipation, psychosis, apathy, anxiety, cognition, urinary frequency, sleep disturbances, fatigue, and pain can be relieved by carbidopa/levodopa in some instances, but later as our disease progresses these symptoms may get worse.

So if my motor symptoms weren't bothering me too much, I'd skip a dose or two every once in a while. Hey, it's my body and my life. If I want to skip a dose or sleep in, I'm the only one who has to pay for it in the long run, unless I was supposed to be somewhere or do something that someone else was looking forward to.

Good luck and peace to us all.

In retrospect myself symptoms began in the summer of 2006. Eventually, the impact on myself movement ability, as well as the increase in tremors and the change in myself handwriting, moved myself to get an evaluation and I was diagnosed in August 2012. I began immediately to read what I could find on the disease, and that included several writings that talked about the growing ineffectiveness and adverse effects of levodopa/carbidopa over time. So I resisted medication. But after 18 months, I realized that especially the tremors were becoming unbearable. I went in for another evaluation and came away with a Rx for Sinemet. I have had one increase in the dosage, and am now at 7 pills/day.

I only know the risk of Sinemet from what I’ve read; I don’t believe it has yet had an adverse effect on myself. On the contrary, I do know that myself symptomatic tremors (internal and external) seem to respond well to the medication. I supplement the medication with physical activity (forcing myself to move) at the gym (YMCA), bike riding and outdoor chores (cutting the grass, shovelling snow, etc).

Despite the positive response to medication, I do sense the predictable progression of the disease.

I started on carbidopa levodopa about 6 months ago. Continued with my previous meds. My biggest problem is dystonia. I'm unable to move my left side often. When I grip my cane with my left hand or the bed bar, it takes quite a while to release it. I'm just coming up on renewing my prescriptions and wondering if there were advancements in medication. Thanks for your help. Good luck with your symptoms and God bless

It works well to manage rigidity, slowness and pain due to stiffness. Common side effects are sleepiness, dyskinesia and dystonia that can be mitigated by optimizing dose frequency, eating timing and exercise (30mins/day 3-5 times a week).

Carbidopa/levodopa is a standard medication in treating PD. It has been really tough for me to adapt to having to take this drug. Timing is everything when talking about its ability to be effective. Needs to be taken at the same time everyday. Its effectiveness is also governed by food intake. It works only if it is taken within so many hours of eating both before you take it and after you take it. You must be very disciplined as your life becomes governed by the taking of this drug. It also needs to be adjusted as PD progresses and it’s a “pin the tail on the donkey” game of figuring out the right dosage to manage the symptoms.

I was diagnosed in August 2020 and didn’t start taking carbidopa/levodopa until earlier this year. My thought was, as long as I was reasonably functional, I didn’t want to risk the side effects.

The patient now wishes they had started a couple of years earlier, as it has made a lot of difference in their ability to accomplish tasks. Their symptoms are shuffling walk, stiffness, balance issues, limited fine motor skills (all mostly on the right side). Very mild occasional tremor in the right hand, so mild they rarely even notice it. They can do things a lot faster during their peak medicine effectiveness. The difference in bay [balance] has been significant and lasts (with less effectiveness) through the gaps between peak times. They used to hold onto the door frame to step over a door seal, now they can walk through the door holding things in their hands. They weren’t able to do that before the medicine.

They’re taking four pills a day, 25/100. They started at three per day but moved to four per day after three months.

They’ve been fortunate in that they have not really noticed any side effects. They’ve had issues with constipation prior to taking this medicine, and had already started mitigating that by eating a handful of shredded wheat minis with every meal, and drinking a lot of water (plus eating a lot more fruits and vegetables). Makes a lot of difference, or has for them.

They are by no means an expert, and all above is not recommendation, just their experience. They suppose everybody has to work out their own path and they think it can vary significantly from person to person as to what is best. Good luck!