Dear friends when should I feel the effects of L/C? What symptoms should it help with? Hoping to be back to my old self soon.
Starting Levodopa/Carbidopa today - Cure Parkinson's
Starting Levodopa/Carbidopa today
49 Replies
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Personally it takes me an hour or two, and helps to some degree with most motor symptoms. Useful information about immediate release versus controlled-release versions:
healthunlocked.com/cure-par...
Hi Park, I know this post is 5 months old. But I welcome advice from anyone. It seems from what I’ve read that our symptoms and responses to medication are very similar. I finally bit the bullet and requested to be put on C/L extended release, after trying Rasagiline and Selegiline with no change in motor symptoms. She started me on C/L 25/100 ( not extended), she said she doesn’t start patients on extended release.1/2 pill 3x a day for a week, then up it to a whole pill. I realize I just started and will be patient. I didn’t expect immediate results but see on this thread some people have. I take the morning 1/2 and don’t notice any difference or side effects. I take the 2nd 1/2 tablet 5 hours later. It makes me a little tired but I am hoping that will wear off the longer I take it. The problem comes after the 3rd 1/2 tablet, 5 hours after the 2nd. The best way to describe it, about an hour later I feel like I am in slow motion. I talk slower ( my speech has normally not been affected by PD). I can barely walk, when I do, I need help and walk like Frankenstein. I feel dopey, unsteady and slow. I assume my body needs to adjust to the medication, but it scared the crap out of me, with worsening symptoms, much worse than when only on Selegiline, which she kept me on. I really couldn’t function without help until about 2 hours later, but no improvement over my normal motor symptoms, just didn’t feel as much like a zombie. Does anyone know if this is a normal beginning reaction? I want to feel normal and be able to enjoy my life, which was the main reason for asking to be put on C/L. Even though selegiline didn’t help my motor symptoms, I could still function, drive,etc without side effects. Sorry for the long post. I certainly don’t want to bail on C/ L after a short period of time but my reaction to the 3rd 1/2 tablet, I am afraid to go on the full tablet dose. Thank you in advance! Btw, I stopped all supplements for the time being since I was taking too many and couldn’t tell which were helping
Firstly, no apology necessary for length or timing of your comment.
If I have too much levodopa, my affected leg gets stiff and walking is difficult. However, in this case, as the medication wears off there comes a point when my walking is improved. It is concerning that there is no point when you register improvement. You are right to be reluctant take a whole pill given your reaction to a half pill.
I suggest turning your comment into a separate post which will get more attention. Perhaps someone with similar experience will comment.
Meanwhile, based on my experience with medication, adverse reactions should be respected - it is not my experience that the body gets "used to" a medication after significant adverse effects arise. Perhaps your case will be different but caution is definitely in order.
Do you have classical Parkinson's symptoms – specifically, one-sided resting tremor?
No tremors, so far just affecting the left side of my body. Neurologist picked up slight difference on right side but the left is so much more affected, I don’t notice any on the right at all. My gait is slow and awkward. I tend to drag my left foot. One of the first things I initially noticed was I started taking steps like a toddler, left foot, left foot left foot, not consciously trying to do that. Sometimes I get surprised and my legs will do every other step by itself. I haven’t figured out a reason why. Many times I try to make myself do every other holding a railing to keep strength in both legs. A prior neurologist checked for postural instability with my eyes closed and I failed miserably. I would have fallen on the floor if she hadn’t caught me. My new neurologist didn’t have me close my eyes and I passed with flying colors. My score was 27 total ( it was a good day, so truthfully it’s probably slightly worse, not by much). No left arm swing. Still mentally sharp. Still smell perfectly. I ended up buying a cane for added stability when walking by myself. I don’t use it much at home. I tend to hold furniture, walls, railings, etc. I have trouble turning around/ over in bed
Okay – probably Parkinson's.
One thing that helps me a lot and worth considering, if possible, is combined hiking and rock scrambling. Like you, I am noticeably impaired negotiating confined spaces like inside the house. I do so much better out on the trail, where I can open up my stride and establish a rhythm. When I go play on the rocks it seems a whole different set of neurons takes over and I am competent.
In any case I do recommend some form of exercise that gets you moving.
Mine kicks in within 20-30 minutes on an empty stomach. But if you mean how long will it take overall, some people report it takes a couple of weeks. When I started I noticed improvement immediately.Good luck!
• in reply toJuliegrace
with just one tablet?
Juliegrace• in reply to
Yes, one tablet. I take 10/100 c/l as opposed to the 25/100 most people take.
By 60 minutes, my tremor and bradykinesia are eliminated. Please let us know how it goes for you.
• in reply to
with just one tablet?
• in reply to
If you are responsive to c/l (some people are not), then there will be a dose amount that will get you in the "on" state. Everyone is different. It can vary anywhere from a half tablet to 3 tablets.
I think most people start with a 1/2 tablet or a 1 tablet dose, and that will typically be sufficient to get you "on".
Some doctors will have you try a 1/2 tablet, and see how it works. If it is not totally effective then they will ask you to try 1 tablet and so on.
park_bear• in reply to
Be aware that carbidopa / levodopa comes in a variety of different dosages. Possibly the most common is 25/100 but many others are really available. So best to specify the actual dosage of the tablet you are referring to. List of available dosages here: parkinson.org/Understanding...
I started with 1/2 tab 25/100. Week later started 1 tab. Still Felt nothing. Went up to 1.5 tabs and it took about 1-1 1/2 months to really take effect. Now it takes 20-30 minutes and tremors stop. Arm swing comes back. While I’m “on” I feel “like my old self again!”
Its important to be patient. I've seen a lot of people that have been willing to tweak their 'natural' (mucuna, ldopa extracts, vitamins, etc) approach over months or even years in search of the 'right' dose or combination, yet were also willing to dismiss CL on the basis that a single dose of a single drug was not effective after a week.
There are at least three distinct levodopa drugs- with carbidopa, with benzaseride, and with carbidopa and entcapone - before you get into dosing, and CR vs IR and all that.
Point is, you may have to persevere with it a bit.
Im only started cl 3 years after diagnosis. It made an immediate positive response 3 pills a day. Im now into my 7th year. I take a pill 4x a day which is my current dosage. Exercise 5x week hiit and golf as much as possible. I'm 63
What kind of HIIT exercise do you do? How long intervals, intensity, and what activity? The definition of HIIT seems to vary a lot from short sprints to tens of minutes per interval.
I use YouTube hiit videos,at home exercises,90 seconds intervals,60 to 80% HRs, 35 to 45 min. High intensity portion varies.
What were your symptoms
2013. Frozen shoulder2015 slight tremor, diagnosis pd
2016 same
2017 slowness,tremor
2018 started cl , improvements
2019 mild distonia left foot stared B1
2020 same
2021 3.5 hrs of on time, considering cut back on cl and adding rasagline
My parkinsonism is bradykinesia and dystonia dominant. I have been on Selegiline for almost a year and started with C/L in late December. I increased the dose by 50 mg every second week until I reached the dosage of 100 mg three times a day. Morning, mid-day, and before dinner.In the beginning, I did not notice so much when I took a pill. But I experienced more symptoms during evenings, nights, and mornings before the levodopa had any effect. Now after some months, I have gradually become better. I have much less dystonia and enhanced dexterity in my affected hand. I also have a better arm swing while walking. I exercise and train neuroplasticity daily and take a variety of supplements.
So give it some time if you don't get immediate results.
What is neuroplasticity?
"The ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury."I follow Joauqin Farias' online Dystonia recovery program. But I guess all kinds of rehab training falls into that category like balance, hand dexterity, gait training etc. Table tennis, Tai chi, golf etc. have also been proven to reduce symptoms.
I've been afraid to start on LDopa because of the side effects. I was diagnosed Nov 2019 and I'm living with a noticeable/intrusive/annoying tremor on right arm often accompanied by shaking left leg and trembling lower lip (chin). That said I can do everything I want function-wise. I run 10k 3 times a week.
I hadn't fully appreciated that LDopa cd restore me to a non-tremor self. I clearly need to give it more thought and perhaps some action.
• in reply toTomkins
I too was afraid but I can’t stand the tremors and gait issues and bradykinesia. Quality of life is awful. Side effects are none so far but it’s only day 2 now. Any effects are reversed upon ceasing the drug. I see only upside. If it doesn’t work then my next option will be PTT FUS or stem cells if available.
Smittybear7• in reply to
How do you qualify for stem cells or DBS or any of these other procedures. I was told that you have to have exhausted the drugs to qualify.
• in reply toSmittybear7
I don't at the moment.....I said if the C/L doesn't work then my next option will be PTT FUS or stem cells if available. For the PTT FUS option in Switzerland it costs $35,000 per side and you have to submit a lot of information about your situation and they will then decide whether you are a good candidate for the procedure at SoniModal. Hopefully PTT FUS will be available in the United States soon. There are other FUS procedures already available in the United States which are also an option should C/L eventually fail to control symptoms.
Stem cells will be in clinical trials starting soon. Who knows if this option will ever become available to the masses but I hope it will in the next few years.
Hopefully the C/L works for me for years to come but you never know with this condition.
Tomkins• in reply to
hello hiddenhow are you getting on with C/L?
I am getting closer to starting
I've found Eric Ahlskog book very helpful
thanks to everyone for their tips
I call it the Lazarus drug! I wish I had started on it when diagnosed but no point jogging backwards. I would implore you to read The New Parkinson’s Disease Treatment Book by Eric Ahlskog, Prof of Neurology at the Mayo Medical School. It is written for us PwPs to understand the condition and the treatment options available, alongside the experience of a man who has spent 30 years treating patients with Parkinson’s. Also take note that you need to take your CL within a pretty strict time frame in relation to meals, preferably holding off protein until the end of the day. It’s worth it though!
• in reply toWonky-Bride
I met with Dr. Ahlskog on Monday at the Mayo Clinic and he convinced me about the benefits and safety of C/L. Also he discussed about taking C/L one hour before a meal or two hours after eating to be effective. He is incredibly knowledgeable and very nice. I did buy his book as well. Started taking C/L yesterday. I feel it is slowly helping with symptoms but to be honest I feel a bit nauseous and dizzy. Maybe the body will eventually adjust I hope.
• in reply to
Your are very lucky to have have met with Dr. Ahlskog!
Is he your regular PD doctor now?
What dose did he start you with?
• in reply to
One tablet (C/L 25/100mg) three times daily for first week...then go up the next week 1.5 tablet three times daily until I find the dosage that works for me. Right now it is only day two and I honestly don't feel too good. Hope my body adjusts to it. I will stick with Dr. Ahlskog.
I guess if C/L doesn't work then I have no other option other than PTT FUS.
• in reply to
"until I find the dosage that works for me" is two tablets, 25/100, three hours apart, all day and night. 1600 mg total a day.
• in reply to
Thank you RoyProp. When I think about it, I just hate having to be dependent upon having to take pills to keep me up and running every three hours but here I am in just that position. I guess we have no option though. Perhaps PTT or thalamotomy via MRIgFUS may be another option.
condor39• in reply to
I am a 3 tabs of 25/100 every three hours around the clock, with NO side effects.I take Prolopa, the Canadian version of Madopar)
• in reply tocondor39
Thank you Condor for your information. I wonder how higher doses related to length of time with Parkinson’s. In my opinion many that are on three tablet days and still suffering are not being served by their neurologist.
Condor, are you still doing well taking 3 CL 25/100 tabs every 3 hrs around the clock ? I am on 1 CL 25/100 every 3 hrs 45 min and experience very debilitating off time , the same as when I was on cl 10/100.
ParlePark• in reply to
Took me over a month for the tremors to subside, but they did thankfully. I find his rule of 1 hour prior and 2 hours after meal to be effective is best advise I received. If I eat a heavy protein meal, I need to wait longer than 2 hours prior to dosage. Again, I think the book will quell your c/l concerns as they did mine.
Wonky-Bride• in reply to
That’s amazing! You are blessed to be in such good hands - please let us know how you get on.
Takes about 60 mins if taken on an empty stomach. It may take a few weeks to work out the dose you need. Hopefully you will feel totally normal for many years from now!!
In just two days after only taking six pills my tremors are gone. I have needlessly been avoiding C/L based on fear of side effects. My quality of life had diminished to such a low place that I ceased living. Someone referred to C/L as the Lazarus drug and it’s true. I’m back from the dead. Yesterday I felt like my old self for the first time in five years. I almost cried. Wanted to share this with you all in case it helps anyone on the fence with regards to trying C/L. And thank you all for sharing your knowledge and your support. Hope this miracle lasts for a long time God willing.
kevowpd• in reply to
nature.com/articles/s41531-...
There are people that would prefer be literally disabled than use levodopa. It is a completely bizarre situation. Its not like you can't stop using it if it isnt working or generates hideous side effects.
Smittybear7• in reply to
Good luck. Sounds promising.
Hello ShakenNotStirred ~ My husband is the PwP. We have only seen a slight improvement in his tremor with C/L so we started him on the B1 HCL. He has experienced more relief/improvements adding the B1.
I hope this helps.
Good luck and God bless!!
Lizzy9
• in reply toLizzy9
What is your dose of B1?
Lizzy9• in reply to
Hi Roy ~ My husband is on 25 mg twice a day. We tried 1500-a.m. WAY too much. Then we tried 100mg sublingual. Again WAY too much. Both times anxiety was almost unbearable for him with worsening of tremor. Then we tried the 25mg. No more anxiety, lessening of tremor, no shuffling gait, talking a lot, laughing a lot, able to keep up in conversation. He said he felt better, but that “something was not quite right.” So because of that and that he still had a tremor I bumped his B1 one up to 50 in a.m & kept p.m. dose at 25. He had increased anxiety & numbness & tingling in both feet and legs. We stopped the B1 yesterday and plan to go back to original dose on this coming Monday. I wish I could find a 5 mg tablet. I feel like we are super close to finding his optimum dose.
Have a fabulous day!!
Hi- I'm not sure what L/C has helped with really.. Been on over a year-3 tabs/day- often it makes left hand shakes worse..? maybe it has helped with my weak legs sometimes , but i would have to stop drug to see... I DO know C/L often makes me very sleepy and feel like i'm on drugs.."out of it" feeling . So I try and eat a good meal half hour after drug.. if I don't i remain sleepy. Once in a while get bit nauseated .. Apparently it's the gold standard for pWp.. I must say I believe more important than the drug is REGULAR spirited exercise ! I do speed walking (ala John Pepper) and take lots of supplements such as Lion's Mane. Also lift weights daily. I really want to do exercises re: neuroplasticity , QiGong, and mindfulness meditation...also important- avoid sugar eat less carbs... I heard Keto diet good. I'm thinking to reduce the C/L to half tab at lunch.. Good luck!
Delighted you are having such success with C/L. Gives me courage to try it. As kevowpd says I can always come off it if it is ineffective.
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