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Should I start Levodopa right away?
I am 55 years old and I was just diagnosed with PD last week. I am having tremors in my left hand, fingers and forearms. I also have twitching in the back of my neck. I am walking all right, although my left leg feels just slightly heavier than my right leg. I don’t sleep very well.
I have read so many conflicting articles on when to start Levodopa. Can anyone share their own stories and offer some advice or insight into this medication, and when to start taking it?
Thank you.
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35 Replies
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Hi Ron,
I was diagnosed 8/2020. I started C/L 8/2020 per my Doctor, who we really like. I take 2 pills 3 times per day. It seems to really help. I am 65 yo. My physical therapist told me she has worked with others who refuse to take C/L and are jittery messes. That has been my experience. I also take 1 Melatonin for sleep before I go to bed it helps a lot.
Blessings,
Mike
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Hi Mike,
Thanks for your honesty. I was just diagnosed last week so I’m still a little overwhelmed .. there’s just so many questions and so many different reports on PD. But it sounds like I should start with a low dose of C/L.
I read that exercise is good for PD. So I did two 30 minute walks today and 50 jumping jacks this morning. My back hurt a bit afterwards but I feel the need to push through it. Do you think it’s a good idea to force myself to exercise?
I’ve been taking Zopiclone for sleeping .. it seems to work.
Ron
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Ronald,
Here are three papers supporting the benefits of exercise on brain health in PD.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3690528/ ”Exercise-enhanced Neuroplasticity Targeting Motor and Cognitive Circuitry in Parkinson’s Disease” (2013)
https://pubmed.ncbi.nlm.nih.gov/19532109/ “Exercise and neuroplasticity in persons living with Parkinson’s disease” (2009)
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30898-4/abstract “Aerobic Exercise: Evidence for a Direct Brain Effect to Slow Parkinson Disease Progression”
Good luck,
Rob Johnston (Maine, USA)
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Thank you Rob!
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Hi Ron –
You might want to try searching on google for “myths about levodopa”, paying particular attention to credible sites such as universities, research hospitals, and foundations such as the Michael J Fox Foundation, the APDA, and the like.
I was diagnosed last year at age 63 and my neurologist advised me to start on carbidopa/levadopa, three tablets of 25-100 per day. He started me on a half dose the first week to get my body used to C/L and I haven’t had any problems. I’m feeling much better these days.
Look into exercise. There have been some controlled trials in the past few years that indicate vigorous exercise slows down the progress of Parkinson’s. Search for “Parkinson’s SPARX” or “Parkinson’s Park-in-Shape” for details of the trials.
Think cardio at 80-85% of your maximum heart rate for half an hour, several times a week. I work out daily (probably overkill) on an elliptical trainer and also take brisk walks for a couple of miles. I use an Apple Watch to measure my heartbeat. If you are sedentary now, you will want to be careful to build up to this level gradually.
My personal approach is to take my C/L, exercise like a fiend, and hope that the current research efforts pay off soon.
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Hi Kirk, Thanks for the positive feedback.
It sounds like C/L is a good thing, although I am concerned about it’s effectiveness wearing off after 5 years or so?
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Ron –
From the MJFF website, the page titled “Ask the MD: Myths about Levodopa”, the bullet point “Levodopa loses effectiveness over time”:
“After taking levodopa for some time, it certainly may feel like the drug is less effective. Often, higher and/or more frequent doses are required to control symptoms. However, this is mostly due to gradual worsening of the underlying disease rather than medication’s effects diminishing. As long as you take it, levodopa will remain beneficial. But, if the natural progression of your disease requires higher levodopa doses, side effects — including dyskinesia (irregular, involuntary, uncontrolled movement) — can occur. This may lead to a dose reduction, which, in turn, may limit some of the drug’s benefit on symptoms, such as tremor. (Note that some individuals may not tolerate a dose reduction, preferring dyskinesia to other symptoms.)”
My advice is to read much from the reliable websites. And skip google’s summary stuff; it’s not helpful. Read the actual pages. Maybe even buy some books on Amazon and read them. After a while you’ll see a consensus and get some understanding of the spectrum of issues. Remember that everyone’s course through Parkinson’s will be different; you are not destined to have every symptom or side-effect or progression. The thing that gives me hope is the vigorous exercise approach. I suspect/hope I can delay further symptoms long enough for the medical approaches to improve, either stopping progression or perhaps something close to a cure. At the very least I’ll be much healthier 🙂
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Kirk is right here. My neurologist/MDS said the same thing when I asked because I was put on the gold standard immediately over a decade ago. The first dose was like magic that worked well right away and there’s been no looking back. I did have to adjust the amount I was taking due to taking some other medication with it, but it still works just the same today.
Be careful of some of the sites and information out there because there’s a lot of false or outdated information on many of these sites. By the time you read some of these, you’ll be calling your local funeral home and making arrangements because they’ll discuss the morbid nature of the condition and everything else! How would I know that!
As always, if you have any concerns consult with your neurologist.
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Thanks John. I appreciate the advice. When you started the Levodopa, did you feel ‘normal’ again, without tremors or stiffness?
How old were you when you got diagnosed? Do you exercise much?
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Ron,
It was like magic!
I went from clenching my fist and jaw with awful stiffness throughout my body, spasms, and tremor, to being able to move around. The very first dose allowed me to uncurl my hands and loosen things up a lot. The tremor subsided and I did indeed feel normal again. What’s interesting is I never showed any side-effects until my dosage was changed to a controlled release which caused severe nausea and hallucinations which caused me to cold-turkey-quit after I heard voices, saw aliens, rats, and bugs! I’m on C/L now but on a different combination that still works well for me today.
Tremors, from what I understand, are not always helped with the C/L and other medications are needed as well. PD being what it is means that this varies from individual to individual. Talk to your neuro about this.
Exercise is a part of our wellbeing. I don’t jog, but I am active and do things outside. During the warmer months, I go for walks and do things outside in my yard. I used to bike ride a lot, but the traffic is scary, and I lost my balance once and nearly landed headfirst into poison ivy!
I also play piano daily, as I explained to Clive in response to his post. Piano playing is a lot more than pressing keys in the right order at the right time and involves the whole body. I learned these techniques when I studied professionally as a music major. (A career path that ended very abruptly in its infancy and started and ended when I was 49). The exercises are similar to what we do when we go for PT.
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Thank you John,
Your assessment of C/L is spot on. I believe that if one does the combo of daily exercise, diet and medication it can be critical. And can be effective longer than just 5 years.
To me the hope is , like you John , it can have effect for many years. At first when I heard , only 5 years, it worried me, but oh well I’ll be 70 by then. Thanks John , don’t write our epitaph quite yet.
Blessings, Mike
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Hi John,
I was diagnosed just over a year ago now, and I have not taken C/L at all.
My Neuro suggested that I wait to see the progression before I start taking it.
He suggested I ensure that I exercise at least 4 times a week and see how I go.
I now go to gym 2-3 times a week, doing weights, and cycle( about 16 kms), 9-10 miles, twice or 3 times a week. I have found this helps me tremendously.
It does keep my tremors down to a minimum. The only additional medication I take now is 1000mg of Vitamin E a day, again which he suggested.
I also have seizures, which are under control,and am on medication for that, so I really do not want to take anything else unless and until I really have to.
But of course we are all different and different things work for us.
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Clive,
You summed it up, we’re all different and this “disease” treats everyone differently which is why it’s always best to consult with our neurologists first. The seizures you have add in a different element into the pot here and you and your doctor are right for not wanting to put something else into the mix. There’s nothing wrong with exercise which is good anyway PD or not.
In my case, I was active and working full-time until 2012 and the gold-standard worked magic for me right off the bat. I was the IT guy who ran around an office doing end-user support and network administration, but even with all that exercise, I was stumbling around as I went from carpet to solid wood or granite floors in the various parts of the building, and nearly fell down a flight of stairs when I froze when I reached the topmost steps. It was this incident which put me on notice and then the other cognitive and organizational skills caught up with me. My work-life ended then rather suddenly.
Today as a “retiree”, I’m still active but not running around the house. During the warmer months, I’ll go out for walks by the river and do things around the house in addition to practicing piano daily. Piano playing is far more than just pushing keys with the fingers and hoping to achieve sound at the right time. Being professionally trained, I learned various muscle relaxation techniques and stretching exercises which I employ prior to practicing. These are part of the Alexander Technique and are similar to what we do when we attend PT sessions.
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<p style=”text-align: center;”>I would say start taking it to get rid of Bothersome symptoms. Don’t increase until it obvious your symptoms are worse. Just be aware of all side effects. When I get the right amount of meds I feel like I don’t have pd.
sorry I didn’t read the rest of the replies.</p> -
I started Levodopa as soon as I was diagnosed because the tremors were stopping me playing my French horn. It made me very sick so my neurologist tried Azilect. That had no effect so I combined levodopa and Azilect. The sickness lasted for two or three months but I persevered because the tremors went and I could play again. That was nearly four years ago and I’m still on the same dose. Tremors start sometimes if I get very stressed, but otherwise I’m OK. Exercise is very important. I do three classes a week which work on strength, balance and mobility. That’s great fun – and humbling because there are people there much worse than I am who haven’t given up and we have a lot of laughs. My music room doubles as a gym with cross trainer and other equipment. I try to do about an hour a day. I had trouble sleeping – I woke at 4am and couldn’t get back to sleep. I take melatonin – and try to keep the bedroom as cold as possible. That seems to work. The people who do best with Parkinson’s in my experience are those who can manage to keep a positive attitude (doesn’t work every day!) However, as others have said, we are all different and we have to find our own best ways of dealing with it.
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Thanks wobblygirl. Can I ask how old you are? Do you have any ‘off’ times?
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I’m 78. No “off” times as such, but I do have “off” days – usually when I’ve done too much the previous day or let myself get stressed. I also use the red light coronet twice a day.
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There is a great group of mentors (free) that help newly diagnosed PWP that you can talk to https://parkinsonsassociation.org/mentors/ (you don’t have to be from San Diego since it is all online/phone). Another great resource is Dr. Laurie Mischley’s PD School https://www.parkinson-school.com/ with a very large group chat she hosts on each topic. She talks specifically about l-dopa medications and all the important bloodwork you need to track based on taking the drug as one of the side effects is that it depletes b vitamins. If you need more tools for management PD I would consider biofeedback too! https://www.youtube.com/watch?v=MryBnGeaUFM&t=3s
Hope this helps!
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Hi Ron,
My case was a little different. My main symptom is loss of left hand dexterity. I don’t have a resting tremor. I do have a tremor while I am rotating my hand. I do have a limp when I walk.
My neurologist suggested I start carbidopa/levodopa in August 2021 so I started taking it. After a month of taking it I called back and said that I was not sure if it was helping. I asked if I could wean off the medication. So, I weaned of over 2 or 3 days. The next day after I had completely stopped, I woke up in the middle of the night with a panic attack, terror, a feeling of doom and gloom. I went back on the medication and tried to wean off more slowly over a couple of months. I still woke up at 2 or 3 am and had to take something to help me sleep. After I was totally off, I had some good days and some bad days(nausea til noon, lack of mental energy and still not sleeping well). The bad days became more frequent so I decided to restart the medication.
I am doing fine on the medication now and the tremor when I rotate my hand is better.
However, my quality of life was good before I ever started the medication. In my case I wish I had not started the medication until my quality of life was impacted. One thing I think the neurologist should as is “How is your quality of life?” If the answer is “good”, then I don’t think the medication should be started yet.
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I recommend acupuncture for stiffness. It has been amazingly helpful for my husband. It may not work for everyone, but it won’t hurt anyone and there are no negative side effects. It is worth a trying every 2 week for 2 months.
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What a great discussion on the benefits of C/L. I have been on the medication since 8/2020. It has been beneficial. My dose began at a total of 5.5 pills per day up to 6 pills per day. I do exercise daily and try to eat right. This Tuesday I met with my Neurologist, because of some stiffness I requested that I be bumped up to 7 or 8 pills per day. She looked at me and said why would you want to do that. “At 65 you are a young man and more medication could cause more problems.” So she suggested more exercise as the best way to deal with stiffness. “C/L is not the answer for every thing and it can have consequences.” Blessings, Mike
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My husband was diagnosed almost 3 years ago at the age of 65 and remains on Rasagiline. His symptoms are still relatively minor. He has been a dedicated gym rat for years which I think have helped him keep this in early stages. The Dr. Has offered him to go in C/L, but truly, besides stiffness a foot that drags some and a minor tremor on one side that is moving slightly to the other, it hasn’t affected quality of life, as of now. Every drug has side effects and they can be scary. We look at the cost/benefit and decided to remain the course until such time it really impacts his life. He needs help with buttons sometimes. He is enrolled in 2 PT programs that have been exceptional. BIG and LOUD. We’re in Houston and TIRR offers them. Life skills in order to help you with Occupational Therapy, voice and movement as the disease progresses. I encourage you all to look into such programs. At the end of the day, EveryBODY is indeed different.
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Hi Ron, I am 63, diagnosed at 59 and take Azilect to hopefully slow down progression. I still have periodic tremor in left hand but I can still tie my shoes…so happy me.
I’m in mode of holding off on CL till I can’t do things with my left hand as I’m concerned about possible hallucinations.
As for sleep, I get good sleep. I’m mostly a back sleeper and heat my side of bed before going to sleep and I use several layers to help create a weighted blanket. Laying still crossing my hands seems to calm the tremors and I sleep thru the night. On the flip side, I like the room a bit cooler, 68F which helps offset effect of all the blankets. -
My husband has Parkinson’s and was diagnosed 2 years ago at 66. He has rt hand tremors and foot flop when running which he now maxes with 1-2 minutes of running. My experience as a nurse is that levadopa only works for so long so save it for when it is necessary for functioning. Sometimes the side effects in the future can be worse than your current tremors. He has seen a neurologist who just said to come back when it gets worse. I found out about a naturopath who has been very helpful. He has acupuncture every 2-3 weeks which has relaxed the right side stiffness he had been having. She has prescribed some supplements and homeopaths which have really helped him along with exercise at least 5x/week which help keep dopamine levels up. Living is more work with Parkinson’s but in my opinion I would definitely diligently exercise and see if that works before I would start levadopa.
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I just made my appointment for acupuncture this morning. I will let you all know how it goes! Blessings, Mike
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Am 65 and consider myself an athlete , exercising about 2 hours per day on average . Started on selegiline 4 years ago , now on 100/25 c/l 6x per 24 hours. I believe Pd is a complex syndrome and each patient is somewhat unique i.e. one size does not fit all. Have done a lot of research and don’t see any downside with c/l provided it helps. Started on 3 pills total per day , then became 5 then became 6 as I would wake up off in middle of nite and needed it to get back to sleep . Have been at 6 a few years , disease gradually getting worse , will prob strongly consider DBS if it comes to that. Until then it becomes a quality of life issue and I strongly believe I would be non functional without the meds (as opposed to fully functional right now …)
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Andrew,
I consider my self an athlete as well. At 65 my C/L dose has been going up. Today I am on 6 pills. When I asked the neurologist to up my C/L due to my stiffness her response was why not exercise more and keep the C/L at the same level. I already get massages every 2 weeks. I will also begin accupuncture every 2 weeks. Follow the research and don’t fall back on more pills. Blessings, Mike
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Hi Mike: I have a massage chair which is in my bedroom for those times the meds seem not to work . It also doesn’t breathe on me and I don’t have to wear a mask haha. Am fighting tooth and nail not to up my meds will see what happens ….first 2 -3 years c/l was a wonder drug now more hit or miss. I exercise almost maniacally but tore cartilage in knee (prob running up hills) so now need surgery. Will continue to keep fighting no alternative. Thanks for feedback
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Hi Ron,
Thanks for raising this question. It’s always good to learn directly from the experience of other patients. I learned a lot from all the above replies.
My approach has been to delay starting medication as long as my PD doesn’t interfere significantly with my ability to exercise or my “quality of life” in general (see also John Robinson’s related reply on 3/31/22). I was diagnosed with PD about 3.33 years ago at age 73. My symptoms were a slight tremor in one hand, small handwriting and soft voice. I knew I had it even before going to the neurologist so I started researching the pros and cons of PD meds well before the first visit. My neurologist recommended that I start medication right away in order to feel better. On a 1 to 10 scale, (1= slight nuisance, 10 = debilitating), I was at a “1”, so I decided to go with an exercise program and postpone medication until “later”. I started distance running on a local high school track for the high intensity aerobic component, gradually increasing to 5K (35 minutes) 3 times per week, which is what the guidelines recommend. On most days I also do about 45 minutes of stretching, movement and strengthening exercises (per physical therapist guidance). Obviously I can’t tell if all this has helped (or not) to “slow down the progression”. Now 3 years later my symptoms have progressed to a “3”, mainly due to increased hand tremor and some difficulty with eating utensils. But I sleep through the night, I can still run 5Ks and I have no stiffness, aches, pains, or poor balance symptoms. So I’m not ready for PD pill-taking yet. “Quality of life” decision criteria for starting medication makes a lot of sense to me!
I would also like to suggest my latest favorite Parkinson’s book: By Dr. Eric Ahlskog, “The New Parkinson’s Disease Treatment Book (Partnering with Your Doctor to Get the Most from Your Medications)”, Mayo Clinic, 2nd ed. 2015. Regarding when to start medication, Dr. Ahlskog gives a perfect hypothetical example of two individual PwPDs, both presenting the same initial limited symptoms, mainly a resting tremor in one hand: Ms. Jones is a trial lawyer and concerned that juries will be distracted by her tremor or think she is nervous. Ms. Jones should start medication! On the other hand, Mr. Smith is a semi-retired farmer whose work is not compromised by his PD. He socializes for farmer talk with his friends at the town coffee shop every morning and is not bothered by the tremor. Mr. Smith can defer treatment! This book also emphasizes the need for an exercise program even with medication. Another takeaway (for me) in favor of delaying the start (if possible) is that PD medication is very complicated and potentially very expensive – not like simply taking an aspirin 3 times a day!
Best wishes,
Glenn
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Thanks for the insight Glenn.
So your symptoms have gone from a 1 to a 3 in three years, without C/L? Did your Neurologist accept your decision to postpone the medication?
Do you have a resting tremor at all? Currently I have a mild tremor in my left hand, fingers and forearm that come and go throughout the day, so I would give it a ‘1’. My problem is at night when I try to fall asleep the tremor goes to a 2 or 3.5, but it stops if I grab something or move my left hand a bit. I can pick up objects without shaking, except that my cell phone waivers a bit in my left hand .. probably due to more leverage on my thumb. I also have twitching in the back of my neck. Overall, my condition is about 1 to 1.5 – so I am thinking about holding off on C/L for now.
I exercise (walking, jumping jacks, stretching) for about 45 minutes a day.
There’s also a book called the Parkinson’s Protocol. https://www.theparkinsonprotocol.com/home
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Ron,
After further thinking about it, in 3 years following diagnosis, without medication, I went from 1 to 2 on my personal PD severity scale (subjective rating of increasing impact on QOL).
That’s another good question about the Dr.! My neurologist strongly disagrees with me about postponing the start of PD medication. We have the same conversation every six months during my follow-up visits, where we end up agreeing to disagree. The Dr. says that I will lose much of the benefit of the medication by starting later in the disease progression, when higher doses will be needed to treat the symptoms. I understand that time will come and I know there are patients who say they wish they had started medicating earlier. But to me, my quality of life is still good enough “as is” so I continue to be a hold-out for the time being. I should add, my neurologist is also a proponent of exercise and PT for his PD patients and says it is as important as taking the right medication. He strongly encourages me to “keep doing what I’m doing” as far as exercise and PT.
I have weakness and a prominent (constant companion) resting tremor in my left hand. Sometimes in my right hand as well. No other motor symptoms. I think that might be called a “tremor dominant” case of PD. The rest of me is in ok shape, at least no worse than the average healthy 76 year-old. I eat a mainly mediterranean diet plus I need a lot of “nutrition bars” in order to maintain my weight.
The clinical trials I have read about use either a treadmill or a stationary bike for aerobic activity. Jumping jacks are aerobic certainly.
In my experience, it’s very important to develop a holistic exercise routine under supervision of a Physical Therapist who specializes in treating PD.
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Hi Glenn,
I agree with you 100%,
I will only start taking medication when I basically have no choice.
I also much prefer excercise while I am still able to and it certainly does reduce my symptoms.
The one other problem of course, as I know from my experience with my Seizure medication, is that the body builds a tolerence for any medication, and over the years you have to increase the dose.
Thus I will wait as long as possible.
Luckily my Neuro, actually both my Neuro’s, I used to live in Johannesburg and moved to Cape Town, ( both cities in South Africa) agree that it is preferable, if you can to delay.
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