What dose levodopa reduced your tremor? - Cure Parkinson's

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What dose levodopa reduced your tremor?

47 Replies

How many 25-100mg carbidopa levodopa tablets, how many times a day, reduced tremor?

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47 Replies
mktbob55 profile image
mktbob55

At first it was about 4-5 cl. I then I switched to stalevo but I got bad nausea then finally switched to Rytary and have settled into 6 per day for the past 13-16 months. Seems to be working well for me now

in reply tomktbob55

4-5 tablets carbidopa levodopa per dose? Three times day?

mktbob55 profile image
mktbob55 in reply to

Sorry, 4-5 c/l per day at first

marcet profile image
marcet

No more tremors with madopar at 7am 125mg 1x and 5pm 62,5mg 1x. Also at 1pm azilect 1x, no side effect

dadcor profile image
dadcor

Period Before Thiamine: tremor plus many other symptoms and up to 5-6x50-200mg a day to suppress'm.

Now with Thiamine: 1-4x25-100mg a day depending on the intensity of my activity and no symptoms, Just rarely due to some emotions, small tremor in my left hand. Actually, I even have days without carbi/levo at all, yet with tremor, but mild .. Thiamine is a MIRACLE..!!!

Mjm012649 profile image
Mjm012649 in reply todadcor

what dose of B1 are you taking? And, do you take a break from it at all?

dadcor profile image
dadcor in reply toMjm012649

It varies depending on how I do feel.. Recently it is 100mg/day.

in reply todadcor

Not a therapeutic dose

dadcor profile image
dadcor in reply to

You think so.. :) Who and how defines the therapeutic dose limits for different people..??

in reply todadcor

Dr Antonio Costantini,

highdosethiamine.org

dadcor profile image
dadcor in reply to

Sure he started all this. I've spoken to him at least ten times before... He guides how to manage the individual dose and disease. Dr C does not define or create rules... Everything is well described and explained in his materials, better read'm carefully ..

ion_ion profile image
ion_ion in reply todadcor

How many years do you have PD?

Thanks.

dadcor profile image
dadcor in reply toion_ion

almost 12

Fri. two hrs after dinner, 1 tablet c/l, one hour nothing, took another. One hour till no tremor. Lasted 2.5 hrs. Took ER200, finished nite no tremor until 5 a.m.

in reply to

EMPTY STOMACH

Saturday no dinner and no snacks, one tablet C/L IR100 at 6:30 p.m., one tablet C/L ER200 at 8: p.m. Empty stomach rule: on hour before and two hours after food for medicating,

Saturday evening result, no tremors early evening and through half the night.

Kattripp profile image
Kattripp

Still on c/l 25/100mg three times a day which was his original starting dose, thanks to Thiamine HCL 2 grams per day in divided dose.

Goal is not to alleviate all tremor, although the combination does a great job.

Amantadine 100 mg twice a day has greatly improved rigidity in shoulders and back prior to Vit B1 but still takes as this combination works for him. (Bionpharma is the manufacturer of Amantadine he prefers as no side effects.)

Good luck to all ...be safe.

GymBag profile image
GymBag in reply toKattripp

Regarding above recommendation for Amantadine

I have taken Amantadine for about 10 years, maybe 12 , now at max dosage of 3 a day for 6 or 8 years and it is very helpful with Rigidity and Tremor.

You may find over time that the effectiveness wears thin. Then under doctor supervision you will slowly wean off it or reduce it , take a holiday of a few days and then go back on. You say no side effects , but I doubt it because every PD med has side effects , just varying intensity for various people over different time frames and it takes time to show. One does not start to take it or stop taking it without a doctor involved monitoring and a real need to take it . This is serious #&#@ , not a simple medication but when it becomes necessary it works. Hold at low levels as long as you can.

drugs.com/pro/amantadine.ht...

Kattripp profile image
Kattripp in reply toGymBag

Agree with all you said... but the “ no side effects” was only in relation to my husband on the Bionpharma brand.

Another brand, Symmetrel, had many side effects and he did not tolerate it at all.

Everyone has to find what works for them... that is the goal post... that moves over time. Stay well!

Bianhua profile image
Bianhua

Kattripp where can one buy Thiamine in USA CA?

parkie13 profile image
parkie13 in reply toBianhua

You can Google it and get a whole bunch of suggestions. EBay, Amazon, Vitacost Swanson's

Kattripp profile image
Kattripp in reply toBianhua

We like Vitacost brand. Need to go to their website at:

Vitacost.com

“Vitamin B1 500 mg” printed above that, it says “as Thiamin HCL” which is the type Dr Costantini recommends

There are 300 capsules in a bottle (blue and white label) so it costs $.01 a capsule, and they often have sales.

Good luck! Stay home, stay well.

Zella23 profile image
Zella23

This seems to be working well for my husband.

3 and half doses per day Modopar last one at 4 30 pm, reduced by half a dose since adding in the Rasigiline.

1000 mgs twice a day B1 - taken since June 2019

O.5 mg Rasigiline

2 x 100 mgs Amantadine - added in Dec 2019

Changed BP med and Tamulosin to just Terrazozin. 5 mg since Dec 2019

He does take lots of supplements - lucky swallowing is ok at the moment!

Tremor really reduced after Amantadine.

Overall feels ok, dyskinesia seems better controlled, still can exercise - more difficult with the lockdown in London, try to walk whenever possible.

Use Smovey rings plus exercise video indoors.

in reply toZella23

There are reports Tamulosin or Doxulosin good for Parkinson’s

Zella23 profile image
Zella23 in reply to

We’re hoping that Terazozin helps, not so much help with Tamulosin.

My husband definitely seems to be able to walk without so much fatigue recently,

Also added alpha lipoic acid as well to usual supplements. On our trip last May to European Parkinsons centre the nutritionalist there advised on changing antioxidants given to help PWP so we’re trying to do that as well.

in reply toZella23

I wrote Tam, mistake

Zella23 profile image
Zella23 in reply to

No probs- thought you might have! Just went for our 2 mile walk in the woods! My husband and I are trying to do this daily on our one exercise per day allowed at the moment Takes about 40 mins.

PDsux_10 profile image
PDsux_10 in reply toZella23

Hi, I just came across your post and was curious about the antioxidants the nutritionist recommended, what are they and are they helping?Cheers

Mel

Zella23 profile image
Zella23 in reply toPDsux_10

Hi the nutritionalist was if I can remember, keen on whatever anti oxidants you were taking, be changed on a regular basis. She recommended taking Vit D 3 at a much higher dose than recommended.They promoted all the colourful vegetables and fruits to be eaten daily. Such as blueberries, strawberry’s, raspberries etc. Look up antioxidants in foods there is lots of info online.

My husband and I have adopted much more of a Mediterranean diet eating lots of fruits and veg containing antioxidants, every day. He takes multivitamins as well, vit B1, magnesium, vit D3, with K2, COQ 10, alpha lipoic acid AL carnitine, turmeric, ginkgo biloba, NAC, high strength fish oil, and recently broccoli seed protocol.

In September he started to use a red light hat that we purchased from Australia.

With all the above he is still doing well, plus walking daily 2-3 miles.

Takes PD meds but has recently cut down Modopar to 2 and a half pills a day. Takes Rasigiline and Amantadine.

Hope this helps you,

PDsux_10 profile image
PDsux_10 in reply toZella23

Wow that's tremendous info, thank you for getting back to me so quickly. My husband is on a very similar routine with vitamins and various supplements that your husbands taking. My husband takes mucuna levadopa powder for symptoms and hasn't started taking the typical pharmaceuticals yet. He uses a red light lamp until we can afford the helmet and it seems to help him as well. Sometimes he uses an infared light bed which he loves! He is only taking 250mg freeze dried broccoli seed supplement I don't know if they help yet or not, but I figured they can't hurt. I will def ck out the increase in vit D3 and incorporating more antioxidants. Thank you again.Happy New Year!

Mel

Dobro52 profile image
Dobro52

I tab 3 times a day, spaced out. Some fringe tremor in left hand before next dose due or if cold or exerted a lot of effort e.g. today - hours of gardening in cold breeze. Higher dose might eradicate tremor but rather delay any increase in dosage till clinically needed. Age 68, diagnosed one year ago.

stepan13 profile image
stepan13

2-3

GymBag profile image
GymBag

Why dont you go to a doctor?

in reply toGymBag

Everyone is different. I am different.

Calmom profile image
Calmom

I take two c’/l 25/100 at 6:30 am. I’m usually good until 1:30 pm. I then take 1.5 25 /100. About 7 I take just 1. I also take Selegeline with first two doses. Seems to work great. Stopped off time.

Kecher profile image
Kecher in reply toCalmom

When do you take the Selegeline exactly?

Calmom profile image
Calmom in reply toKecher

I take selegeline with my first dose of c/l in morning and with my afternoon dose between 1 and 2 pm

Bode22 profile image
Bode22 in reply toCalmom

My husband is taking a half c/l at 630 am with seligiline then 1 with seligiline at noon and finishing with one c/l at 5 pm. We are starting to think he is not getting enough , as he is feeling tremors more often than before. It will be three years in August.

in reply toBode22

Have you found solution?

Bode22 profile image
Bode22 in reply to

My husband is now taking sunnier 4 times a day. 630, 1130, 3:00, and 8. Along with seligiline 2 times a day. He had two good weeks and then a set back due to high blood sugar. We lose about 3-4 days when this happens. Blood sugar is under control now but we are waiting for meds to go back to working. Hard sad days but I as his care giver and wife will press on and continue to research

Johnboy46 profile image
Johnboy46

I take 1x 25-100mg Sinemet three time a day. I upped it in January on the advice of my neurologist, as my tremor was getting worse and has now levelled off.

Good luck and stay safe.

in reply toJohnboy46

You upped it from two times day?

How long have you had Parkinson’s?

Johnboy46 profile image
Johnboy46 in reply toJohnboy46

No ,I was on 12.5/ 50mg , 3x a day and upped to 25/100mg, 3x a day. I was Dxed 3 years ago this week. doesn't time fly when you're having fun.

My neurologist prescribed Pramipexole (Mirapex). It stopped my tremor for the first four hours of bedtime. Quote doctor, "His hardest time is at night. Has had problems for some time with insomnia and settling down because of his tremor. I suggested we use low dose Mirapex. Will start 0.5 mg at bedtime that he can repeat if he wakes up during the middle of the night."

in reply to

Had to stop Pramipexole. Caused edema

Farooqji profile image
Farooqji

Roy, have you tried following for controlling the tremor:#Propranolol

#Kemadrin

#Belladonna extract

#Benadryl

in reply toFarooqji

Benedryl

Farooqji profile image
Farooqji in reply to

With the consent of you doctor, you can try Propranolol and kemadrin. Many have got relief from it

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