Hi all, my husband was diagnosed with Parkinson’s about 3 months ago. He has a right hand tremor and was started on one pill and is now taking 4 carbidopa levodopa pills per day. We have seen no improvement in the tremor and at times, he feels it’s worse. Could anyone comment on their experience with this medication and how long it takes to see results and dosage? Thank you!
Carbidopa levodopa dosage : Hi all, my... - Parkinson's Movement
The immediate release version of carbidopa levodopa is often prescribed by default. This is unsuitable for most patients because it results in a very uneven release of levodopa. If that is what he is taking, get him a timed release version which is readily available. This provides a nice even level of levodopa for many hours.
The fact that this helps with some of his symptoms is an indication that he actually does have Parkinson's.
Conventional medicine is about symptom relief. Not knocking it - it is very important. Once you have got a reasonably effective medication regimen in place, you will want to take a look at stopping or slowing progression. What works for most of us is high-dose thiamine. Here are a couple of links to get you started when you are ready to look into it:
Personally, Qigong has been very helpful for me. My story here:
are you familiar with Dr. Hadlock's work?
She claims to have "cured" some PD patients with Eastern Medicine
I wish I had known about this before starting Sinemet
Not convinced it works as well as she claims
but since she claims it only works if you have been on dopamine replacement drugs for less than three weeks and I did not find out until 5 years after diagnosis
I did not have the option
Western medicine neurologists consider it hocus pocus and don't even suggest it
I find her to be bizarre, and her claims regarding the dangers of reducing or getting off of levodopa are directly counter to my personal experience. As a result of improvements in my underlying condition, I have able to reduce levodopa as needed without any difficulty. Her claim that if you have ever been on any neurological medication of any kind for three weeks or more during your entire life makes you ineligible for treatment eliminates all candidates except for very early stage patients. Patients who have minimal symptoms, symptoms that can be erased entirely by the placebo effect.
Likewise for her claim that Parkinson's is due to prior foot injuries. Who has never injured a foot? Never ever sprained an ankle, broken something, or stubbed a toe? Of course the vast majority of Parkinson's patients would have had such incidents, just like everybody else.
Do not waste your time on that one.
Eastern medicine is an extremely broad field. I personally have gained great benefit from the practice of Qigong. I posted that story here: healthunlocked.com/parkinso...
Hello, I was told by my neurologist not to take Sinemet with food. I don't. I wait about an hour, after my dosage, then I eat. Protein, he says, interferes with Sinemet doing it's job. Tremors, stiffness, and slowness are relieved greatly, for me, following this regimen. I made the mistake of eating a couple of times, too close to dosage time, and I noticed that the Sinemet's effect on me was greatly reduced. My tremor and stiffness were noticeable. Hopefully, this info. will be of help to you. Each patient with PD reacts a little differently, it seems, to some of the medicines, so it definitely is not the case that one solution, fits, for all people. Having PD, is different for each person, just as each snowflake is different, from other snowflakes.
i totally agree with BazinSpain taken after food the medication cant do its job so therefore well before meals is my plan here is what meds i take pramipexole 1 1/2t tablets x3daily levadopadispersable 2 x5 times oer day levadopa hard capsules 1x5times daily then 2 slow release in the morning then 12.5/50 levadopa 1 x5 daily and my wearing off periods are increasing and ive undewent 2dbs operations ......all good stuff ,ah the beauty of parkinsons
2nd opinion is a good idea. There is no definitive test for Parkinson's. You must trust your doctors experience with the disease. If you get another doctor, a movement specialist to weigh in you and your husband can feel more comfortable with the diagnosis. Not that you'll ever feel comfortable with a diagnosis of PD. CL should make a difference. In my case it did immediately and I have had diagnosed PD for 3 years.
It will take a while for your husband (and you) to adjust. Meds are trial and error. The more you read the posts here and information everywhere, you will discover the unpredictability of Parkinson's and how it can be different for everyone. What I find most frustrating is you finally think you've got it under control, when it once again suddenly and unexpectedly rears its ugly head.
My thoughts and experiences from some of the comments, which do not negate others' thoughts and experiences, but reflect differences:
When I was first diagnosed, I was given a prescription for Mirapax (a dopamine agonist), which made me extremely tired and nauseous. For various reasons, I changed neurologists.
The new one took me off Mirapax and put me on C/L (Sinemet), which worked well. But I had to take with a light snack (non-protein) since it also made me nauseous. The snack prevented that. Since I've been on C/L for years now, it no longer makes me nauseous, but I am very protein sensitive -- that is, do not eat much protein from meats or fish or dairy most the day, as interferes with medication effectiveness.
My current neurologist is a movement disorder specialist. Huge difference and I recommend your husband see one, at least for a consultation if there is not one close to you. He says the C/L ER does not work well as it is released unevenly and unpredictably. He used to prescribe it for me at night for sleeping only. I take Rytary now, a time released C/L. Not sure it is a first line prescribed drug and it is new and expensive. My Neuro did get me into a program with the manufacturer to supplement the cost so I only pay $10 co-pay.
My neuro also says it takes the body a few months to fully adjust to new meds or any medication changes, so make them slowly. The body likes consistency. Too much medication can cause symptoms to worsen.
The one constant I was told by all the docs I saw was exercise, exercise, exercise.
There is a lot of great information and generous sharing of people's experiences here. I've learned a lot and discovered options. Complementary care is essential. For me, that includes acupuncture, yoga, and meditation. I eat little refined sugar and tons of veggies, limit dairy and gluten, and consume protein mostly at dinner or later. I also supplement with D3, B12, Magnesium, CoQ10, E and C, and plan to start on high dose Thiamine after Thanksgiving weekend which I learned about and has helped many people here.
It's a rocky, uphill journey.
Thank you PdGal4, very informative. He does see a movement disorder specialist- a neurologist friend told me that’s important. I have read several posts here about Rytary and thiamine so we will discuss at the next visit coming up in a couple of weeks. My husband corrected me in that he feels the C/L has made little difference so we will see what she says at the 3 month visit. Thank you again!
Hi❤️ The carbidopa levodopa caused me to throw up...even taking it with food. And I was only taking one. I am on no PD meds at all. The Selegiline caused chest tightness. My dr is onboard with my decision to treat my PD with good nutrition and exercise. I see him every six months. I’ve had PD for at least six years. I still have the tremor, but it’s no worse without the meds. Best wishes to your hubby! ❤️😘
PD cases are like snowflakes... no two are alike. You need to find what works for you.
I would suggest wto things. One is to track on and off periods (assuming he has them) and see their relationship to when he takes the pills and adjust by trial and error.
Second relates to the best medicine.. exercise. I found for my tremor, shadow boxing worked well. Now, note that while exercising and immediately after, the tremors may seem worse because of the adrenaline. But afterwards, you may see marked improvement. Try it.
I don't have resting tremor but most of my friends with PD do and C/L helps them in the beginning and for many years once they get to their ideal dose.
A good reference book is "The New Parkinson's Disease Treatment Book" "Partnering with Your Doctor To Get the Most from Your Medications" Second Edition
by J. Eric Ahlskog, PhD, MD . Ahlskog is a Movement Disorder Neurologist at the Mayo Clinic . He has nearly thirty years of experience as a clinician and researcher.
Ahlskog states you should not take C/L with food, particularly protein, since protein competes with the levodopa, preventing the levodopa from crossing the blood brain barrier. He recommends not eating for an hour after you take C/L since it takes about one hour for the levodopa to cross the blood brain barrier and not taking C/L for two hours after you eat.
Exercise is also important to help slow the progression of PD.
Another good resource manual, which is also inspirational, is "Every Victory Counts" (How to live well with Parkinson's) by the Davis Phinney Foundation. It has in depth information about exercise, nutrition, emotional health, medication, therapies and more, and it is free.
park_bear included links to high dosage Thiamine therapy. I just started this therapy in consultation by email with Dr. Constantini. I am hoping it slows/stops my PD, especially my balance and anxiety problems due to PD.
What Dr. Ahlskog states re: taking c/l on an empty stomach is the opposite of what my movement specialist recommended. She suggested that I take the medication with food, but NOT protein. I take c/l and the wait two hours before eating protein. I agree exercise. Thank you for the book recommendations.
KLFA, Any Chance you’re taking the Controlled Release (CR) C/L? Dr. Ahlskog recommends taking that with food (not containing protein) to speed the release into circulation (page 150). CR C/L only 70% of L crosses the blood-brain barrier.
Immediate release C/L works differently. 99% of L crosses the blood-brain barrier. That he recommends taking on an empty stomach. However, if nauseous he said it is ok to take it with a few soda crackers, plain bread, toast without butter, or half a banana (page 153).
Each movement disorder specialist has his/her own perspective. What ever works for you is best.
Your husband's experience with carbidopa/levodopa is identical to mine. I was dx five years ago. Just started on C/L about three months ago, definitely feel it has increased my tremors and it makes me nauseous. My neurologist refuses to accept that I cannot take this medicine. Is there anything else out there that works on tremors?
I’m increasing convinced that protein is the problem and suggest he try virtually cutting it out for a while. Turns out we don’t really need much in any case - more than 30g a sitting and our body just eliminates it ( according to my integrative GP). Won’t harm him to go without for a week or so to see if it helps. Personally I miss the cheese!!
I was diagnosed in January 2018. I've been on the minimum dosage of Carb/Levo 25-100 three times a day. I also have a right hand tremor. The movement specialist that I see said that the Carb/Levo would not decrease my tremor. While I sometimes feel that my dosage could be upped due to other challenges with PD, I've opted to stay at the lower dose. Looking forward to reading other comments re: Carb/Levo and temor.
The only outward sign that I currently have of PD is a tremor. Although I have unseen symptoms that cause challenges. I will be giving less protein a try. I went to a PD support group meeting last night, and someone told me that they always take their medication at least an hour before their next meal. It's easy in the morning, but it gets a little complicated as the day goes by depending on what's happening.
Hi Cindrew thus is Pamela amd i take 4 Carbidopa, Levodopa, Entacapone throughout the day and I also take Mirapex ER 3.0 and then in the evening I take 3 Mirapex .75 .
I also take 1.0 Rasagaline ar night. I have been on these for 5 years changing inly the disage of tve Mirapex once . i still have occasional tremors even though I take all my meds. Goid days and bad days. .that"s all.