ARE YOU USING A LOT OF C/L( SINEMET OR RYTARY..........)? IF SO PLEASE HELP!

[OREOLU]

1) How much are you using?

2)What are the side effects that you experience?

3)How do you manage these side effects?

4)Do you also need to use it during the nights to enable you to get off the bed and go to the bathroom?

5)How do you deal with fatigue?

6)Do you have to take it to sleep at bed time?

7)Are you non-tremor dominated?

I would be very grateful for your kind response. Wishing the best.

[jimcaster]

I don't think this will be very helpful, but here goes:

1. I typically take two 25/100 Sinemet pills twice a day. (4 pills per day).

2 and 3. I have no side effects.

4, 5 and 6. I don't take medication at night and I don't have fatigue.

7. I do not have any resting tremors.

I was diagnosed in 2018. Began taking sinemet in December of 2020.

Good luck, OREOLU!

[JMSL]

Hi,

I think I take a lot of C/L. I'm take just one pill of generic sinemet every 3.25 hours (while awake, generally 5 times per day) but it's 25/250 strength so this is 1,250 mg of levodopa per day. I had been taking 2.5 tablets of 25/100 for each dose but switched to just one of the higher strength about 2 months ago.

My main side effect is what I call a "twisty" gait, in that my left hip/leg turns inward when I walk so my gait isn't normal. The MDS neurologists that I've seen believe it's a form of dyskinesia. I sometimes get a foot-tapping/jerking type of dyskinesia as well. I also get a very dry mouth at times, or parched is probably a better description. Chewing gum usually helps that, or if it's at night then I suck on a Thera-Breath lozenge specifically for that. When my dose is wearing off, I sometimes get shortness of breath & a pounding heartbeat. I also can get profound stiffness of my left leg & foot, & a claw-like stiffness of the left hand, as well as hand/finger tremors and toe-curling. And s l o w movements & speech.

I take a very small dose of Mirtazapine every evening, which I think helps me sleep. I generally don't need to take any PD med during the night because fortunately I can get out of bed without assistance & usually need to get up only once during the night if at all. I generally do not have excessive fatigue and I generally do not require a nap during the day. I don't eat much protein during the day & I try to drink a full glass of water with each of my doses. I try to exercise my voice and my body every day, though sometimes I miss a "dose" of those important "medicines" but I definitely feel better when I incorporate them into my day.

I don't think I'm tremor-dominated because I feel the rigidity/stiffness & slow movements are my most problematic symptoms, but toe-curling and hand-tremors were the initial symptoms that prompted me to see a neurologist when I was diagnosed in 2015.

I hope this is helpful!

[Astra7]

1. I take 3 madapor a day totalling 600mg dopamine. I also take 1 azilect (100mg) and sifrol - dose recently increased to 2.25 mg.

2. About 45 mins after medication my legs go crazy for about 10 mins twitching and moving up and down. With intense concentration I can stop it but feel very uncomfortable.

3. I pretend I’m dancing

4. I’m ok at night

5. I try not to over comit to activities and keep my stress low

6. Sometimes I take an extra 1/4 pill at bedtime if I feel ‘off’

7. I am not tremor dominant

I was diagnosed in 2016 aged 52.

[kz59]

Hi there, I take Rytary. 23.75-95mg. Originally the doc prescribed 4 pills 5 times a day, but I found that it made me feel anxious. I lowered it to 3pills 5 times daily. Sometimes my last two doses I only take 2, because my dyskinesia lets up when I'm on less. I used to be on Sinemet and felt so exhausted, I could hardly function. I feel much better on Rytary, but it does not help my significant tremor, but neither did the Sinemet. My problem seems to be sleep at the moment. I don't sleep more than about 2 to 3 hours a night. I don't know if that's the Parkinson's or the Rytary. The one side effect of the Rytary that is miserable is, when it starts to wear off I feel like something is crawling under my skin. It's absolutely awful. I find that about 45 minutes after I take the next dose, it goes away. I do need to take it before bed, as I get uncomfortably stiff and can't sleep. I wish you well and I wish that I could give you some real answers. I think it's just trial and error. Unfortunately there is no magic pill for any of us.

[OREOLU in reply to kz59]

Thanks for your response.

[qazwsx11]

I take 2 tablets 25/100 four times per day (up from 2/3 times a day 45years ago) and one ER for the night. I have some dyskinesia, which will sow mostly in social situations or when I talk or eat. Each dose lasts less and less 2-3 hours. To avoid fatigue, I avoid stress, take breaks, do yoga, walks and HIIT or core workout and nap midday. Also a steady routine with support of the family helps a lot.

[OREOLU in reply to qazwsx11]

Hi mishod. Thank you for your contribution.

[Sherry1960]

1. I take 1 Rytary 48.75/195 mg 4x@day. In the morning I also take 1 1/2 tab c/l 25/100 mg) and 2 tab c/l @ 3pm

2. Dyskinesia is main side effect. Fatigue sometimes mid afternoon. The tablet c/l causes nausea periodically.

3. I dont fight the dyskinesia and just work through it. Goes away sooner.

4. I get dystonia in my feet at night. I take a Baclofen at night to help with cramping of feet. My MDS is not sure if it is too much c/l or a wearing off time. I take last Rytary at 7 pm as I have been told the brain needs time to rest.

5. When I am experiencing an off time, I stay home if possible.

6. I am tremor dominant on my left side. The c/l usually controls it unless I am stressed.

I was do @ 53 yrs in 2014.

[OREOLU in reply to Sherry1960]

Hi Sherry1960. Thanks for your input.

[Sherry1960]

I also do Rock Steady Boxing 2x a week and Delay the Disease exercise group 2x a week as well. Exercise helps fight the negative side effects.