18 months since diagnosis.
Started 1 x 100/25 Levocarb 4 times daily 6 months ago but did not seem to help. Neuro just up my dose to 4 x 100/25 three times a day. Does that seem like too much?
Too much Levocarb?: 18 months since... - Cure Parkinson's
Too much Levocarb?
Written by
Pilot108
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46 Replies
•
Yes that is way high for so soon after diagnosis.
How firm is your diagnosis - do you have classical symptoms like one-sided resting tremor?
No tremor, just stiff legs,poor balance, slurring speech ,micrographia,just to name a few
Yes. Too much.
Thiamine hcl best
Pilot108• in reply to
I am bad for trying something and then I stop if I don't see results fairly soon. B1 was an example. I need to give it a fair chance as 2 weeks was not enough
It has taken people three months or more just to find their correct dose.
Art
You will just have to reform in this case... And the earlier you start the earlier you get to an optimal dose, and yes it will take months perhaps many months and it is just no way around it and you're going to have to now or when you are very much more advanced... From which you cannot reverse only slow further progression so get ahold of yourself because it's not really a luxury you can afford anymore. Or you can wait until it is way too late, your choice.
That is a very large amount per dose... 2.5 x 100 is usually sufficient for most people....
Dr. Ahlskog in his paper "Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease" says:
“The point of diminishing returns with dose increments is 2.5 tablets each dose for most PD pa-tients; however, occasional patients require 3 tablets each dose for the best effect (provided that the 25/100 formula-tion is taken on an empty stomach),”
“Restated, the optimum individual dose is between 1 and 3 tablets and in early PD is taken 3 times daily.”
Pilot108• in reply to
Started on 1 x 3 times a day then 2x 4 x times a day now he wants me to start the week at 3 x 3 times a day and the following week 4 x3 times a day. So far not doing much at all.
• in reply toPilot108
He may be testing you with a high amount... I.e., If there is no improvement in your symptoms you probably don't have Parkinson's...
Hikoi• in reply to
It is more likely you have stiffness and gait problems and very little tremor. About 30% have this type of PD and it is not as responsive to levadopa unfortunately.
Is it responsive to anything besides maybe exercise?
I dont know of anything you can take. But your chances of getting dyskenesia are less given your age. It is particularly a problem for young onset ie those diagnosed before 40 years. People here have varying rates of progress so it is very difficult to judge how you should proceed from their experience. I guess thats why we have neuros. Personally I would increase meds slowly and stop when I got adequate relief. All the best.
id only consider it if it works but i believe 1400mg / day is about max.. youll be having dyskinesias wayy to soon imo . cheers
Gosh that is 6 times what I take after ten years! If you start that high you have nowhere to go.
Maybe you can call his office, explain you are worried about taking such a high amount and ask if he prescribed it to confirm his PD diagnosis?
I think you hit the nail on the head
My neurologist told me it takes at least 6 weeks to see how you are going to react to a change in meds. I think you are on a high dose. I've had PD for 17 yrs & I'm taking 7 - 8/day. Do you have young on-set? I was diagnosed at 46.
I was diagnosed at 58 but the earliest symptom showed at 55
Hi Pilot108, this disease according to literature affects everybody differently,I believe you have a non-tremor dominant type of PD,which sometimes might require higher quantity of C/L to treat.If your Doctor is a MDS, work with him.I am sure he knows what is doing. I once was in your situation,when my initial MDS retired and was replaced by a younger new MDS,who doubled my dose of C/L from 4 to 8 pills a day.And If I had agreed,it would have been increased to roughly 1200mg of Levodopa with a switch to a slow release,3 years post diagnosis.I am also aware of dyskinesia,but so far,it has just been the occasional head bobbling,very mild.
• in reply toOREOLU
Hi OREOLU, Hikoi:
OREOLU said "I believe you have a non-tremor dominant type of PD, which sometimes might require higher quantity of C/L to treat."
Hikoi said (in another post on this thread): “It is more likely you have stiffness and gait problems and very little tremor. About 30% have this type of PD and it is not as responsive to levadopa unfortunately.”
Are you both referring to the same thing? That is, "non-tremor dominant PD" is the same as "stiffness and gait problem and very little tremor PD"?
Are these variants strictly speaking called "Parkinson's Disease" in the literature? Or are they instead referred to a "atypical PD" or "parkinsonism"?
I have always called what I have as "Parkinson's Disease", characterized by tremor and bradykniesia, and which responds well to levodopa.
Which I think is also referred to as "classical Parkinson's Disease".
And I point out that in the "The New Parkinson's Disease Treatment Book" by Dr. Ahlskog there is no mention of different types of Parkison's Disease, so I presume his book is about "classical Parkinson's Disease"
. Note that this is a 500+ page book which I see as the definitive user guide covering the treatment of PD.
Can you please comment?
Hikoi• in reply to
Levod,
Yes Oreolu and I are talking about the same type of Parkinsons. There are really as many types of PD as there are people with the condition as we all have a slightly different version. That is why one treatment does not suit all and "the cure" isn't simple because it will be different for each person depending on genetic make up etc.
These two subtypes PIGD (postural instability and gait disturbance) and tremor dominant are widely recognized but there are others. I can't find the references at the moment. That is why I think it is dangerous for lay people to give categorical statements about treatments. Unless one can question the individual we really don't know their circumstances. For example many people will swear by B1 treatment and it may well be good but they omit to telling you that they are taking levadopa whether it is sinemet or mucuna which will be treating their symptoms too. But I digress.
Yes Parkinson's is a complicated condition with well known movement symptoms and not so well known non motor symptoms particularly those caused by autonomic dysfunction in PD. These types are not atypical. Atypical refers to the Parkinsons Plus syndromes.
OREOLU• in reply to
Hi,I agree with Hikoi,100%.
• in reply toOREOLU
Hi Hikou, OREOLU:
Thank you for your responses!
I asked my questions, since your responses to the OP seemed to differ from mine...
But now that I understand your POV better, I think my responses to the OP were reasonable:
+ 4 tablets per dose “is a very large amount per dose” (especially for someone who is newly diagnosed, even if they are the PIGD sub-type), and this is based on Dr Ahlskog view of a max of 3 tablets per dose (and adding here the specificity of 'on an empty stomach') for patient who have PD (regardless of the sub-type).
+ with a very large amount being prescribed, the OP doctor’s intention may be testing to see if the OP actually has PD
P.S. It is interesting to note that Dr Ahlskog does not set a "a max levodopa dose per day". You take as many doses as you need, and this of course is a function of how many doses your take per day (i.e., which is a function of the inter-dose interval).
Hikoi• in reply to
Lervod,
I was not commenting on your advice spoecifically but you may notice me a bit irritable on here when people give what I consider bad advice such as fast walking to reverse symptoms and it will produce GDNF. When I ask for proof there is none (then conspiracy theories are used as an explanation). Yes walking helps pwp but it helps everyone and especially as they get older. But friendships and feeling connected is as important for slowing disease progression according to what I read.
Brief comment on your post, I wrote my response because what I read suggested PIGD and I thought testing for PD was possible but a bit random. Nothing had suggested his diagnosis was in question. Yes I agree 4 tabs 3xs day does seem like overkill but I don't know the reputation or quals of his neuro or what he was thinking. I do think it is good to tell the poster that so he/she can ask questions of the neuro etc.
Our daughter takes 2-25/100 every 3 hours and still has early off time when her legs start buckling and feet get heavy and hands shaking.
Now having terrible delusions, hallucinations, insomnia and some manic episodes.
Sadly she was admitted to a psychiatric facility yesterday for evaluation. She is so scared and we are all so sad that this is happening but want her to get help if this is something besides Parkinson’s.
Classic Parkinsons Willies mom. With the right treatment she will get through thisepisode. Reassure her, worry and anxiety are the worst things for her.
Thiamine hcl plus carbidopa levodopa
Less meds and less chance of dyskinesia and possible no ever dyskinesia.
join my facebook group:
"parkinson's thiamine hcl"
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Parkinson's Relief, Questions and Answers
Parkinson's Disease affects people in many different ways - no two persons alike. How many times have we heard that! Not a Dr nor a pharmacist you are not taking 100 x 25 carbadopa/levadopa, but you are taking 25/100 carb/ levo. Carbadopa assists in providing more levadopa to cross the blood/brain barrior allowing more symptomatic relief. Carbadopa also helps relieve stomach distress caused by levadopa. I also started on carb/levo 3 x day. After 3 mo I went 4x per day ODT (Oral Dissolving Tablet). The ODT immediately relieved my 2+ year old stomach distress. BTW this was after my first two Neuros. Ensure your Dr is a movement disorder specialist.
PD is a neurological disease. It takes time to arrive at the correct dose for you. Not like an ear infection that clears up in days after antibiotic treatment. How many years were you symptomatic before you saw a doctor. Are you taking an MAOIs?
Many people put off taking PD meds because they have been known to cause problems down the road. I prefer to get there first. Life makes no guarantees. Live for the moment, be kind to one another. "Never count the days - make the days count". M. Ali
I asked my neurologist if he was a movement disorder specialist and he said no but he primarily works on people with Parkinson's.
Your Dr may be self taught and truly an expert, especially if he is passionate about his work. I have tremendous respect and admiration for them. They work incredibly long hours always in their A game.
Are you satisfied with your treatment. Are you confident?
Not to dwell on the negatives, but I haven't heard any positives. PD is chronic and progressive. Just my opinion if you want to maximize your distance on Life's Journey stay informed, eat right, be kind to one another, and keep moving.
Remember there is an incredible army of brilliant dedicated people giving it their all.
Take care and be safe.
My specialist says there is often a threshold effect, and indeed this was the case for me: I started with 100mg Levo 3x daily with almost no effect on my tremor & bradykinesia. Doubled that to 200mg Levo 3x daily, almost instant effect. Titrated that down to 150mg Levo 2x daily for a year or so, now back to 200mg either 2x or 3x daily depending on how I feel.
I asked my neurologist if he was a movement disorder specialist and he said no but he primarily works on people with Parkinson's.
hi, I was diagnosed with PD in May 2013, following a DAT scan . I was initially prescribed Madopar (Co-beneldopa) 50/12.5 , and this was gradually increased to 100/25 x 2, 5 times a day. I never experienced down-times or up-times. In early 2019 it was suggested that I went for a trial of Appo-morph, but this made me worse.
I was then referred to another neuro, who diagnosed me with PSP, (Progressive Supra-nuclear Palsy). I remain unconvinced about this diagnosis, as I don't have the eye problems.
Everyone's experience with PD or PSP is different.
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