side effects

[TinkerTod]

what is Sinemet actually meant to do?

I have stopped taking it because of the side effects

[johntPM]

TinkerTod,

Sinemet gives many PwP a lot of help, albeit with some side effects. There's a good chance that by making small adjustments you can benefit. But, to make a meaningful comment we need to know where you're coming from.

Please give details of your drug regimen: time, name, dose, and the side effects. And your age and the time since diagnosis.

John

[Farooqji]

It's a double edged sword. However a better quality of life makes it worth taking

[kaypeeoh]

I take Rytary and never had any side effects that I can be sure of. Rytary is a longer-acting version of Sinemet. I have a hard time believing I have PD. I stopped medication for about six weeks just to see whether it makes any difference. I didn't see any major signs occur during the six weeks. But I've got constipation which I guess is a symptom of PD. I don't have "Off" periods and I'm not even sure what an "OFF" period would look like. I've had a dominant hand tremor for about five years. Botox injections into my wrist and elbow seems to lessen the tremor somewhat. PD means a deficiency of dopamine in the brain which means the brain is not working as well as it should. I had a DAT scan that confirms I have PD but maybe it's not severe enough for typical signs.

[slimweiss in reply to kaypeeoh]

My husband has been taking Rytary for over two years and it's starting to not work for him just like Sinemet did after the first year of taking it. He was supposed to take the Rytary every 6 hours but for the last year or so, he takes it every 4. It takes about an hour to kick in and then only lasts for an hour or so. By the fourth hour he's a mess. We're at our wits end!! Waiting for the patch to come our next year but who knows when?

[kaypeeoh in reply to slimweiss]

How do you know when it's "kicking in"? I take one Rytary three times daily but often forget the third capsule.

[slimweiss in reply to kaypeeoh]

I can tell it's working when his posture and face look more normal. He doesn't look like a zombie! And he feels better. I tried breaking the capsules open and putting it in water to help with absorption but the little beads don't dissolve. They fall to the bottom of the glass and I have to spoon feed him! His Neuro said she thinks his issues with it have to do with absorption. We quit worrying about when he could eat because it didn't always work out. Consequently metabolizing food with the Rytary doesn't help. It's all just so frustrating. And he's still having issues with holding his urine. I woke up Christmas morning with him standing there zombie like asking for help. He didn't make it to the bathroom and I had to clean the floors because he tracked pee on his feet from the bathroom through the bedroom. Merry Christmas!!

[kaypeeoh in reply to slimweiss]

Oh my! Maybe I have the problem but an earlier stage. Yesterday we drove an hour to the in-laws for dinner. I used the toilet before leaving for home. But had the need to go soon after getting on the road. We made it home and I raced to the bathroom and was unzipping when I realized I'd saturated the front of my jeans. When is it time for adult diapers?

[slimweiss in reply to kaypeeoh]

Oh man do I relate and I don't have Parkinson's. My daughter wanted to check out the tide pools yesterday at the beach which has no bathrooms. I made sure to go before we left but wouldn't you know as soon as I stepped on the sand my bladder went off!!! I tried to manage but knew the impending disaster. There was a slight overhang "cave" and my daughter said "Mom, I'll stand guard!!" My 5 year old grandson stood there laughing as I sighed with great relief! Thankfully the beach wasn't busy with walkers at the time. I wear panty liners and that helps some but I do fear that diapers are in my future!

[kaypeeoh in reply to slimweiss]

If it's not one thing it's another. I forgot to mention I have BPH: Benign Prostatic Hyperplasia. My dad and grandad each developed prostate cancer. My urologist says with that history it'll happen to me. Dad had surgery and although he lasted another 10 years he was never normal after. I needed to pee before making the hour's drive to the in-laws. Then needed to pee again before heading home.

PSA is the blood test for prostate diseases. Dad's was over 2000 before he had surgery. My PSA is 0.5. Surgery is warranted when it's over 4.0.

So guys, there's worse things than PD. Get the PSA blood test if you're over 50. I'm 65.

[slimweiss in reply to kaypeeoh]

Oh I'm sorry about the prostate problems in your family. I've read that eventually all men will develop issues to one degree or another. My brother had problems, the surgeon went in to take his prostate out but ended up just closing him back up because the cancer had spread everywhere. He went through chemo, radiation, pills and managed for 11 more years. He was in his 70's. My hwp had his checked this week and so far all is well with him. His incontinence is Parkinson's based. The really annoying thing is that when he had his annual physical at age 72 the doctor said "You are the healthiest 72 year old I've ever seen!" wow that didn't last long as he was diagnosed later that year. He's 76 now and has had consistent decline almost monthly. ugh this is hard.

[kaypeeoh in reply to slimweiss]

"I tried breaking the capsules open and putting it in water to help with absorption but the little beads don't dissolve..." What about grinding them with a mortar-and-pestle? The powder, like cocaine, might speed absorption?

[slimweiss in reply to kaypeeoh]

Huh. Guess I could try that. I think the doctor is going to take him off of Rytary once the patch comes out.

[Psalmody]

interesting you don’t have many pd symptoms! Something f to be happy about especially I’d you don’t experience off times. How long ago were you diagnosed?

I had to stop sinemet as caused severe stomach pain

[kaypeeoh in reply to Psalmody]

Diagnosed roughly three years ago. I say 'roughly' because the docs tried other meds before going to Sinemet. But even that didn't seem to work while Rytary does.

[Psalmody in reply to kaypeeoh]

I believe they call the first 5 years the honeymoon period so make the most of it. Sadly things changed for me after 5 years.

[kaypeeoh in reply to Psalmody]

I'm not unhappy about it but maybe my problem is hypochondria. I read about a symptom and immediately feel like I have it. Example: I read about hallucinations then thought I saw a huge bug sitting on the toilet rim. I read about balance problems and have the need to stand on one leg while filling my coffee cup.

[Psalmody in reply to kaypeeoh]

I can understand that. It wont hurt to stand on one leg to improve yr balance anyway. Try not to focus on the negatives or else it does make it worse.