Sinemet Dose

[jcavana]

My moms sinemet dose was too high (recently increased to 1.5 pills every 4 hours) so we took her back to her normal dose of 1 pill every 4 hours. She was on the higher dose for a month. How long after reducing a dose do things go back to where they were? Anyone have experience with this?

[Juliegrace]

I assume her dose was raised because she was experiencing a worsening of symptoms. What happened when the dose was raised? Things may not go back to where she was because she may be experiencing a progression of the disease. As for side effects, they should lessen pretty quickly with the reduction of the dose.

[laglag]

I had a similar experience about 5 months ago. I took 5 Sinemets, every 4 hrs, and my symptoms were advancing during my "off" times. I felt just fine during my"on" time. My doctor raised my dose to 1.5 and my tremors got worse. It took awhile to figure it out, but I quit taking the half pill in the tremors got a little better. So I assume the disease is progressing a little and the half pill was just too much for me. Occasionally I take a half. My thoughts are less is more but everyone is different. 🥊🙏

[johntPM]

When was your mum diagnosed? What is her age? Does your mum take any other PD drugs? When does she take them? And what is the dose of each? You say that the new dose was too high. What makes you say that?

[jcavana in reply to johntPM]

Diagnosed in 2016 - has always taken 1 pill 4 times a day (4 hours in between). She doesn’t take any other parkinson’s meds but does have mild ckd so not sure if that is affecting her processing of a higher sinemet dose.

[Smittybear7 in reply to jcavana]

Does she take a dose at night?

[Beanie57]

Yes we are on that rollercoaster at present. L/D increased s.... became addicted to them. confusion Delirium, anti-phychotic meds added in. Now admit S/E of L/D......... words cannot explain what we are going though. Recent clinical examination ( after 2 years of lockdown and all email consultations involving increase in L/D) ....identified no real progression of Parkinson's Motor symptoms, mainly anxiety issues.

[Rich_M in reply to Beanie57]

What do you mean by anxiety issues?

[Beanie57 in reply to Rich_M]

Her anxiety is off the scale.. regardless if she is due levodopa or not. There is no correlation in 'off' times and anxiety. One minute fine - walks down stairs major anxiety but happens regardless of Parkinson's medication status.

[jcavana in reply to Beanie57]

My moms biggest parkinson’s symptom has always been anxiety. She never has had a noticeable tremor. She does have stiffness and rigidity. She takes lexapro for anxiety.

[BS-ZIG in reply to jcavana]

There is such a thing as “drug related” Parkinsons. I am one of those.

[gginto in reply to Beanie57]

L-Theanine, Ashwaganda, and Rhodiola really help me with anxiety-i used to have rolling anxiety/panic attacks,, but very rarely now.

[Kingsdaughter1]

Recently, I had the experience of being over medicated. My doctor had me taking 15 Rytary daily. I had two back to back days of rapid breathing that I could not control and was taken by ambulance to the hospital. When we determined what was happening, it was decided to to take me off the Rytary. The next month was very difficult because my body went into withdrawal from the Rytary. It took a full 30 days for the med to be out of my body. I don’t know if 30 days is needed for any med that is lowered or stopped.

[jcavana in reply to Kingsdaughter1]

What were your withdrawal symptoms? Did you go on another med right away?

[Kingsdaughter1 in reply to jcavana]

My entire body was so weak that I could barely move. I got horrible headaches, migraine-like that made me so nauseated . I was dizzy and had a hard time sleeping . I was hunched over and didn’t have the strength to get more upright. I had no appetite but forced Myself to eat.

I was put on Sinemet. One pill three times daily. We gradually got me up to five, still. N far cry from the 15 Rytary I had been taking.

[LAJ12345]

Yes hubby has just been through this, reduced back down to 62.5mg levodopa 3x plus 1/2 extra in evening and the extra 1/2 was plenty more. It took a few weeks to settle back down

[jcavana in reply to LAJ12345]

What were his withdrawal symptoms?

[LAJ12345 in reply to jcavana]

It wasn’t so much withdrawal symptoms as gradual easing of symptoms caused by the medication in the first place.

The slow release madopar had sent him from fairly mobile most of the time to almost completely disabled to the point he couldn’t even go to the toilet by himself or get onto the bed. It gave him insomnia, made him suicidal, constipated, increased urinary frequency and he was extremely distressed. He has rigidity to the point he felt he was choking 90 minutes after taking it for an hour then totally frozen before the next dose was due.

So it took a while before those symptoms all settled down again after he went back to his original dose of rapid release.

If he hadn’t got off that medication I feel like it would have killed him.

[Psalmody in reply to LAJ12345]

wow sorry to hear that but interesting

[ladypeanut]

My HWP has had to adjust his doses a number of times and things would begin to transition right away but there would be fluctuations for 3 to 5 days after changing the dose and before a new consistent "normal" would appear. He only takes sinemet and was diagnosed 13 years ago

[Husbandsupporter]

My HWP was having dyskensia symptoms and we thought it was "off" time showing up. Sinemet was increased and EVERYTHING went wrong!!! He was like a marionette with the strings being pulled every which way all at once. He was miserable, as was I. I stopped the extra dose of Sinemet immediately and by the next morning, he was back to only having some Dyskensia. Rytary was added in place of Sinemet and since he's very sensitive to reacting to medication, after 3 years he's only taking 2 Rytary every 4 hours, instead of the 4 Rytary every 5 hours that was prescribed. He's been stable on that regimen until a month ago, when from 2:30-5:00, he's experiencing numbness symptoms on his left side, weak left arm, weak left leg, and bobblehead effect. No, he's not having a heart attack or stroke. I use the theragun massager on him , which opens up the nerve (just above the shoulder blade) and gives him release, slowly, from the weakness. Exercise somedays are great, and others? I have to accomodate by having him lie down and doing things while he's in that position. Amatadine was added to try to head off these symptoms. Some days it works, others, not so much. we've kept a log of his daily activities from noon-until the symptoms "hit". By 5:00, all gone. I add all this because 1 extra Sinemet was added first before the Amatadine and the dyskensia increased rather quickly. It's very much of a teeter-totter, tweaking of meds for everyone, I assume. I hope the suggestions on this forum give you confidence that you're not alone!!!

[LAJ12345]

How many times per day does she take it? If it’s just 3 per day has she tried tried keeping the original 3 doses in the day and just taking an extra half by itself in the evening? That has worked best for my hubby.

Given she only needs a small dose she might be producing some of her own dopamine still which will peak in the middle of the night and be at a low midday. If she wakes up and feels ok before taking her first dose it could indicate this. So as the evening goes on she might find gaps between doses can be longer or amount smaller.

See A which is normal dopamine cycle.

[jcavana in reply to LAJ12345]

She takes it 4 times a day starting around 6:30 - was four hours apart but thinking 3.5 might be better - when we tried rytary the neurologist was perplexed how my mom needed less dopamine with rytary then she had been on with sinemet - his original dose of rytary for her made her manic.

[LAJ12345 in reply to jcavana]

Is the sinemet 100mg levodopa? My husbands madopar is the half dose 62.5 which is 50mg levodopa which is much weaker hence their desire to get him to increase to a “therapeutic dose”. All he needed was an extra half this half dose in the evenings to be back at a good level, whereas the long life is the equivalent of the full 100mg dose which was way too much. They say it isn’t absorbed as fully so is like a weaker dose so they put him on 5 per day instead of the 3 half doses.

When she wakes at 6.30 and has her first dose is she fully immobile or can she get around without it for an hour or so?

[LAJ12345]

The PD nurse here keeps saying it’s not enough and he needs to go higher but we know from experience that he reacts very strongly to all medications he has ever been on and 1/4 normal dose is usually as much as he can tolerate of anything. I had genetic testing done privately and he has blocked pathways for dopamine and seratonin which I think explains his bad reaction to ssri antidepressants and why he can’t handle much levodopa. Also he has a defect that means his liver won’t process some pharmaceuticals as quickly which I think is why he doesn’t need as much. But of course doctors don’t acknowledge this can be a “thing” as it’s too new .

Also his b vitamins , d vitamin don’t work well so he takes Hardys daily essential nutrients with extra vitamers , 12 per day, which I think have a huge beneficial impact for him. Also restore gold at 16 per day. He reduced to 9 per day a while of Hardys and 9 of restore gold which was when he became much more anxious and less mobile which is why they changed his meds in the first place, but now I have him back on the original high dose and he is happy, energetic and functioning again at the lower medication level. But it is hard to get doctors to acknowledge supplements and they can’t prescribe them and they aren’t funded so if your mum is in a rest home or monitored by a doctor then it might be impossible for her to be able to access them as it looks like a massive amount of capsules .