Sinemet dosage

[tgargoyle]

My neurologist felt that I was taking too much sinemet.125/100 and cut me back from 8 pills a day to 6 every 3 hours and none at night. I wind up freezing up and can’t move in bed. I live alone and this is impossible. My mornings go fairly well but afternoons I feel I’m almost getting too much. Is there a limit to how much you can or should take? And is best to take it at regular intervals? I need help!

[CaseyInsights]

Talk to your neurologist, there are add-on medications that work to extend the effectiveness of your Sinemet dose. One route is an MAO-B inhibitor: examples are rasagiline, selegiline, safinamide.

parkinsons.org.uk/informati....

🌺

[park_bear]

If you feel like you are getting too much in the afternoons, stretch out the afternoon intervals as appropriate, and instead take those doses at night as needed.

If the previous regimen was satisfactory, invoke Bear's first rule of fixing things: Do not attempt to fix that which is not broken. I see from your previous post that the current neurologist is awful. I do very well working with my primary care physician who is willing to prescribe what I need. Just another option to be aware of.

Maximum daily levodopa dosage is two grams daily, which would be 20 x 25/100 doses.

Maximum daily carbidopa dosage is 200 mg., which would be 8 x 25/100 doses. A reduced carbidopa version is available if more levodopa is needed

Sinemet label: accessdata.fda.gov/drugsatf...

[Maple-st-tig in reply to park_bear]

Is it known if carbidopa or levadopa is more associated with dyskinesia?

[park_bear in reply to Maple-st-tig]

When the amount of dopamine in the brain exceeds a particular level the result is dyskinesia. Carbidopa helps levodopa do this more effectively, so it is both.

[Maple-st-tig in reply to park_bear]

Thank you for that.

[manoa in reply to park_bear]

I have been struggling since the beginning, trying to achieve a proper dosage of medication. I have read the studies you posted on over medication and presented the info to my wifes "team". It usually falls on deaf ears. The situation is getting worse. I just saw your post on maximum dose of carbidopa. This is something I have never seen before. We are taking 12 x 25/100 throughout the day and 1 x 50/200 CR at bedtime. This would put us way over the 200mg of carbidopa you suggested as maximum. Would like to hear a bit more on the subject.

[park_bear in reply to manoa]

I was unable to find any information on taking more than 200 mg of carbidopa daily. It appears that the 200 mg level was tested and validated as safe, and that's the reason for the specified maximum dosage. In some cases medication with a lower ratio of carbidopa is available.

Carbidopa tends to deplete vitamin B6, so keep tabs on her vitamin B6 and vitamin B2 levels. Detail on this subject here: healthunlocked.com/cure-par...

If she is suffering from levodopa-induced peak dose dystonia, this is potentially a serious situation and her dosage should be reduced if possible. Unfortunately it appears that the medical community refuses to accept this possibility. healthunlocked.com/cure-par...

[manoa in reply to park_bear]

Thankyou for the response. I recently had her blood tested for B vitamins. After I got the result they informed me I would neeed to return on an empty stomach for B6 and B1 blood test and I can only be tested for b2 in a hospital. In Canada I would need to pay approx. $150, Are there other supplements that you feel are essential to take for PWP

[park_bear in reply to manoa]

High dose thiamine and cinnamon. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:

• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:

b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par....

facebook.com/groups/parkins...

A good source of thiamine HCl is here: vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

[00Mark]

Sorry to hear of your problems.I just started Opicapone, which seems to extend the life of my carbidopa levodopa doses.

At night I take a controlled release version of carbidopa levodopa. I usually get by on one 25/100 pill per night, but have the option of two.

It does seem that heavy and prolonged usage of the meds causes side-effects, so it makes sense not to over-medicate. But maybe you should find a more sympathetic neurologist.

Good luck!

[Gallowglass]

Have you tried Rytary? It’s an extended release version of Carbidopa levodopa . It’s important to get the right dosage so if you try it and it doesn’t work your doctor can adjust it. Also in the USA it’s very costly but your doctor should be able to help you apply for financial aid if you are willing to give them a copy of your tax return. I had problems like yours and helped a lot. Don’t give up!

[SowtwareDeveloper]

Have you tried dopamine agonists?

[DogsWoode]

That's just lousy and sorry to hear. Scary indeed.

I am certainly no expert but would be tempted to follow park bears advice and extend your afternoon dosage into your evening, o/n.

That does point to your question...are regular intervals important? Perhaps folks could weigh in on this? I used to think yes however I am not so sure anymore. To me now it is better to follow the rhythm of your body. But....Are there consequences to this approach? Too much l/d fluctuation?

Try It!! Let us know if it works for you. Fingers crossed.

[Jebbie12]

Apokyn by injection is another option. It is my rescue med. But it won’t last until morning so may not meet your needs. I like the suggestion to space out your meds a bit more. Listen to your body. You are the expert on you!

[shaken-not-stirred in reply to Jebbie12]

Yes Yes Yes listen to your body - 3 hourly may be too much as we found and wound the doses out from 3 hourly by 1/2 an hour until you found your sweet spot - PWP is currently sitting at 4.5 hours with 62.5mg if required - starts at 8am and finishes 9.30pm and is doing much better now. So don't stress as somewhere in that you are going to be functioning how you need to be - good luck all the best.

[LagLag37]

I usually go by “less is more “ but occasionally I need a little more. I like to stay pretty much on schedule. Sometimes I take a 1/2 or an extra whole if needed. 🥊

[Batmanbrian]

Food interferes with carbidopa levodopa big time. I try to avoid any food one hour before and after taking meds. Neurologists never told me this. Avoiding constipation is vital as well. I take magnesium oxide before bed for that. I sleep well. I play pickleball about 4 days a week. I was diagnosed with PD 25 years ago. I'm 58 years old.

[Shililly in reply to Batmanbrian]

wow sounds like you have been very successful at stopping the PD? What are your symptoms?What Are you taking anything for PD? i. If so what and what dosage

Thanks so much

[Batmanbrian in reply to Shililly]

The one consistent med I take is carbidopa levodopa 25/100. Two tablets 4x a day without food. I normally don't eat breakfast. I take supplements including high dose of iodine. Also, organic olive oil, baking soda, borax, and chlorine dioxide, I watch a lot of YouTube videos to research. I am Pro Cholesterol. I guess I'm pretty radical. Exercise is vital and pickleball is wonderful!

[buckens in reply to Batmanbrian]

very interesting . Would you please explain how the chlorine dioxide and borax are thertapeutic? Pamela

[rebtar]

I know how hard it feels to not have adequate support.

Most MDS and neuroligists will keep prescribing more, which us also a problem.

It sounds like a priority would be finding a new neurologist or MDS or a good primary care who will listen, and prescribe according to your needs.

I'm also 10 years since dx, struggling with multiple issues.

I'm hopeful, however, that sleep will now be better. I've been struggling with sleep for three years at least. I also moved recently, which disrupted further.

The move exacerbated PD symptoms, and i've been struggling to find med balance since.

I am aversive to increasing meds, and in this case, increasingy night time dose was suggested to me several times. Monday i had an appt. With my MDS, and she again suggested i increase the night time dose from 150 C/L CR (i'd break one tab in half, which i understand then makes it the same as IR.) TO 50/200.

I'd been in a pattern of sleeping fairly well and sleeping very little on alternate nights. Past two nights, using 50/200 CR slept through the night.

You need to find a MDS, neurologist or primary care, who will work with you and listen to you.

There's a reLly good guide online for primary care prescribing for PD. i don't remember where to find it, maybe someone else does?

[Spunkystarfish]

I was having the same problem through the night, and was having to wake up my husband if I needed to use the bathroom at night. My neurologist just prescribed the slow release CL and it appears to have helped. I take one tablet with option of taking 2, but just started this week, and one pill seems to be helping. It’s not perfect, but I can manage by myself - prior to taking the pill, I felt like I had to crawl to the bathroom - not an elegant option!