Anyone on 6 x Carbidopa Levodopa 25/100 mg, less than 2 years after diagnosis?
My neuro is increasing my c/l from 1 tablet 3 x a day to 2 tablets 3 x a day. It seems to me like it's an awful lot of levodopa for such a short disease duration.
Anyone else on such a dose under 2 years since diagnosis?
Opinions would be welcomed. Thank you.
I was up to that at 2 years. Then Qigong and high-dose thiamine have brought it back down. Currently at 4 doses of 25/100 mg C/L daily after 4 1/2 years.
Hello Bear
I started Qigong May 1st. I have tried HDT for months, with and without Dr C's help, without success. I am now trying low dose thiamin since Feb.
Since seeing my neuro, I have upped my c/l dose to 1.5 tablets 3x a day but I don’t know if I will go higher. Maybe I'll wait and see if qigong and b1 work on the long run.
How often do you do your qigong?
My class is once a week and I also do on my own with a video every day now.
Thank you
What video do you use?
Hi there. I am on 6x 25/100 cd/ld and have been for about 5 years . Diagnosed 6 years ago. I am also on Azilect , Comtan as well. I am soon to be 56 year old female and weigh 97 pounds and was a little concerned about how much I need bc of my dystonia but I am a marathon/ultra runner and I work full time and I’m a weight lifter and those meds enable me to continue however I do have the fatigue that goes along with PD and the meds so I will be trying another med in a couple weeks , an all natural med for fatigue. I am very hopeful for this one too. Good luck . Karen
Hello Karen
Thank you for your reply.
Can I ask you the name of the all natural med for fatigue you mentioned?
Parkie, it’s called (generic name) Modafinil. It’s according to the pharmacist a natural form of like an Adderall ect but without the anphetimines and speedy effect bc I sure don’t want to be bouncing off the walls. There is some great info about this med and how it works with the nurons , dopamine and your brain. I know others have tried it and I’m sure it’s like all other meds , it works for some and doesn’t for others. But I’m hopeful. 😊 Karen
My neuro tried to do that just a few months after diagnosis. However, when I tried to take anything more than one 100/25 tablet at a time, I got dystonic dyskinesia in my right foot (my PD affected side). Today (4 years since diagnosis) I take five and a half per day. That's one 100/25 tablet every 2 hours, starting at 8am (the last dose at 8:30pm is a half tablet).
The other thing is, going from 3 per day to 6 per day is a big increase. My neuro told me that I could increase each dose by one quarter of a tablet at a time, and if my symptoms disappeared part way through the process I could remain on that dosage.
Hello jeffreyn
I have been thinking about trying to spread my doses like you do. So you take one tablet at 8, 10, noon, 2, 4, and half tablet at 8:30 pm. Do you get a bad "off" time from 6 pm til your next full tablet at 8 am?
Ha! You've uncovered a typo in my comment. It should be "2 and a half hours", not "2 hours".
As for "off times", I never have them (I have tremor dominant PD).
Taking medication at 6 different times each day, I've found it very helpful to use a multi-compartment pill container (refilled each evening) and a smart phone (for the alarms).
Is this dose of c/l helping you with tremor? I have 2 years and my doc told me to go 6 pills/day instead of 3 but I ignored him. Other then tremor I'm Ok. I'm taking lso 2 pills of amantadine which do nothing.
About a year ago I increased my Madopar dosage from three quarters of a 100/25 tablet 6 times per day, to one 100/25 tablet 6 times per day. Nothing happened for about 3 weeks, and then suddenly my tremor virtually disappeared. I had a great 5 months of virtually no tremor, but then a mild dystonic dyskinesia appeared in my right foot (my PD affected side).
I changed back to three quarters of a 100/25 tablet 6 times per day. After a day or so the dyskinesia disappeared, and after about a week the tremor re-appeared.
I'm now taking five and a half 100/25 tablets per day, as part of an experiment to try to find another "sweet spot", where I would have virtually no tremor and also no dyskinesia.
My neuro gave me an amantadine script for dyskinesia, but I chose instead to eliminate the dyskinesia by adjusting the 100/25 dosage.
What was the amantadine prescribed for?
Tremor.
I’ve been thinking about this lately do only non tremor dominant like myself experience on/off times ? For tremor dominant does cd/ld help relieve the tremor only? In my off times I can’t walk nearly as well and have stiffness. Does that occur in tremor dominant people? Thank you
Tremor is really my only motor symptom. I've never had slowness of movement or stiffness of joints. During the last few months (while I was experimenting with my doses in order to find a new sweet spot) I would experience tremor towards the end of one dose and at the beginning of the next dose.
But I've now found a new sweet spot, so now I have virtually no tremor once again (and no dyskinesia). My new regimen is one 100/25 tablet at 8am, 1pm, 6pm, and three quarters of a 100/25 tablet at 10:30am, 3:30pm, 8:30pm and 11pm.
Maybe I'm under medicated sounds like you're doing well. Good luck
When increasing my levodopa daily dosage, I've learned from experience to allow about 3 weeks for any "long-duration response" to occur.
I have tremor on the dominant side. I take one C / l three times a day(25/100) it has not helped the tremors. Let me know if you find something to relieve the tremors. Thanks
Haven't experienced any off times. C/l has done nothing for my tremors. Stress makes them worse, So does using my cell phone.
So, one tablet at 8:00, 10:30, 1:00, 3:30, 6:00, half a tablet at 8 pm.
Does eating meals interfere with effectiveness of c/l in your case?
The last one (half tablet) is at 8:30pm, but it's not critical. Sometimes I take it at 9pm, or even later.
I've not noticed any interference with food intake, but my medication times do fit in pretty well with my meal times anyway (e.g. lunch usually starts around 1:30pm and dinner about 6:30pm).
How did you know how to add pills and determine the timing?
My Madopar regimen today is the same as 2 years ago. I take one 100/25 tablet at 8am, 1pm, 6pm, and three quarters of a 100/25 tablet at 10:30am, 3:30pm, 8:30pm and 11pm (as per my reply to ConnieD above). I often take the 11pm dose early (e.g. 10.30pm).
The amount of levodopa per day (600 mg) was initially prescribed by the neurologist as 200 mg 3 times per day. To implement this new dosage, I started off with one and a quarter pills 3 times a day, but this triggered dyskinesia. I then experimented to find the best combination of dose size and dose interval, to try to stop the tremor, without triggering dyskinesia.
The timing was initially determined by how many "interruptions" I was prepared to accept (i.e. 7 interruptions per day at two and a half hour intervals is about the maximum). When I tried 1 pill at two and a half hour intervals, I sometimes experienced some dyskinesia. When I tried three quarters of a pill at two and a half hour intervals, I sometimes experienced some tremor. I got the best result when I alternated between these two doses.
I spend about five minutes each evening cutting pills and loading them into a seven-compartment pill container. I have seven alarms set up on a smart phone. Whenever I go out, I wear a bum bag containing both the pill container and a small plastic bottle of water.
When my husband was diagnosed 5 years ago he was quickly placed on Carb/Levo 25-100 2 tabs 4 times per day plus Carb/Levo Extended release at bedtime. I don't think this is a large dose; you have a lot of room to increase. Is it working in that your symptoms have greatly improved? Even though you were diagnosed 2 years ago, I would bet you had symptoms long before that. The day of diagnosis is not the date of onset of your Parkinsons obviously.
Hello Stazina
Thank you for your reply.
When you say I have a lot of room to increase, what I worry about is "very bad hallucinations" that Norm1025 mentions below. Of course, dyskinesia is also on my mind.
Yes, you are right about diagnosis versus beginning of symptoms.
Thank you
You're welcome. My husband didn't have any hallucinations until he was started on Artane not the Carbadop/Levadopa. Have you had any hallucinations on just the Carb/leva ?
Artane is a 19th Century med! My husband was prescribed Artane and caused him memory/confusion problems. He stopped it after I called the major university neurologist and was instructed how to titrate until he was off of it! What a nightmare! The Mayo neurologist, for a second opinion diagnosis, said that HE WOULD NEVER HAVE PRESCRIBED IT!
When I was first diagnosed, the movement disorders specialist put me on 1 tab, 3 times a day. Within 2 years, it was up to 2tabs, 3 times a day, because I had off times, cogwheel rigidity, and muscle spasms/rigidity, which the neurologist found, upon reexamining me. He told me, it sometimes takes a while to come up with right dosage, depending upon symptoms, off periods, etc., In order to even the day out, so that there are minimal off times.
I Have been diagnosed 7 years I got to 5 years and I was having pretty bad off periods so the pd nurse upped my meds which cured the off periods but caused dyskinesia which I have to say is better than off periods just a pain in the a do what you think is best for yourse but bearable considering I have had this shite a long time cant really complain I still cycle 130 miles per week do what is best for you its your body and your mind whatever makes you function is right neurologists are experts but don't have the condition don't forget its your life
Does dyskinesia gradually get worse?
My husband was diagnosed 6 years ago and started out at 25/100 - 3 times a day. His neurologist told him to up them one pill per week until he reached six and that was in his first year of being diagnosed. His symptoms were not that bad I thought at that time. As time went on he got more symptoms but very subtle. In the last year he developed very bad hallucinations which we are still trying to deal with by reducing the meds now. He is currently down to 4 a day and it’s only been a week but we do not see any changes to those or any other of his symptoms. Tried the B1 supplement which didn’t help him. He is 75 and has no tremor, or dystopia. Drooling, can’t turn in bed, un-animated face, no arm swing, mild confusion periodically. Things he can live with if the hallucinations would just stop!
Hello Norm1025
Thank you for your reply.
Please let me know if the hallucinations eventually stops because of cutting down on c/l.
Concerning B1 that didn’t work for him, I just want to mention that some people are now seing results on low dose b1, on a longer period of time. Maybe you could leave him on 100 mg a day and watch for signs after 3 to 6 months? If B1 is HCl, apparently it can't hurt...
Good luck and keep me posted!
If you have not gotten a second opinion it may be worth it. So sorry you are going through this it's awful
Two neurologist and our general practitioner all said to reduce however one neurologist wanted my husband to take seroquel! Now that’s a nightmare! No hallucinations because your drugged up and asleep after taking it. My husband did not want another drug to stop what Sinemet was doing. They all seem to think this is drug induced.
Good luck. I hope things improve for him and you.
Hi Parkie. Are you taking more and more levodopa because is is not working? Or are you taking it to get better results?
Are you aware that there is no Pd medication on the market, other than MAOb inhibitors, that do anything to slow down the progression of Pd? If you want to get better then the only way that is proving to have a positive effect on the progression of Pd is Exercise and specifically fast walking.
If you want to know how I was able to come off my Pd medication in 2002 and have remained off them is to look a my website - reveresparkinsons.net and contact me. It will cost you nothing!
Yes, my husband’s neuro prescribed that immediately on diagnosis with not many symptoms. He started on 1 then 2 then 3 per day then decided they were making him feel sick so now he just takes 1 first thing half an hour before breakfast with a uridine capsule. He is not sure it actually does anything for him.
My husband was tried on many meds, in addition to the 25/100 C/L, could not even take the extended release. His Dr that diagnosed him moved,so the Dr he has now, has him on 3 tabs at a time, up to 7 times daily!! & was instructed to take 1 hour BEFORE he eats. We are currently seeking a 2nd opinion.
I take one madapor in 4 quarters throughout the day. I think it’s 200mg of l dopa.
My neuro prescribed double that amount but I ignored him and have stuck with this for 3 years now. ( actually I started with a quarter 3 times a day).
I would try to stay as low as possible while still getting relief. Also for me taking it without protein is essential.
I also take azilect and supplements.
I am diagnosed 2 years, and I take 15 pills a day C/L 3?pills starting at 7 am then every 3! Hours, 10-1-4-8 that’s a lot of pills, my condition has gotten worse! I don’t know or heard of anyone on such a high dose!
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