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.

Levodopa took me from functionally bedbound to able to get at least 4 vertical hours everyday. Zero regrets.

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.

I'm on the same boat, but levodopa is working for me. Have you tried 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.

Levadopa gave me peace again.

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.

I've been on the LDopa for 9 months now. One neurologist took the plunge, and I started walking about one hour after I took the first dose. I have some symptoms, but they're nowhere near as bad as before the medicine. They still can't give me a diagnosis, but they're leaving me on the medicine since mg quality of life has improved so much.

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.