Hoping for some advice. Started on sinemet earlier last month and gradually increased from 1/4 tab ( 25/100) 3x day to now I'm at 2 tabs 3 x day. After initial bad effects from it I've generally settled down, feeling no effects from them in the day but can still can get light headed and nauseous if I haven't had much breakfast when I take the first set. Yesterday I forgot the lunch ones and maybe that had something to do with the fact that after I took the dinner ones I felt terrible with hot flushes, clammy and then eventually vomiting. Has that happened to anyone else when they forget a dose?
Since I have yet to see any positive results from the sinemet the Dr has advised me to add one more tab next week and break the doses into 4x/day, finally adding another one so I'm taking a total of 8/day to see if that helps with my bradykenesia. Must say I'm very hesitant to even take any this morning let alone shudder at the thought of taking them before eating as I'll have to do when I have them four times a day. :/
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grower
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If you are taking the med with meals the food may be stopping it from working. Food can stop the Sinemet from working heavy meals are the worst for me i eat my meals 2 hours before meds i take meds every 4 hours. If nauseous is a problem eat a little bread or talk to your Dr. about a med to help. I think with time it will past. been late never missed a dose but it messed me up for several hours. I take 1 50/200 er and 1 25/100 5 times a day along with 1 azelect and 1 6 mg requip one time a day With few side affects.
That is the same as 15 25/100 per day. it takes this much to keep my pd in check.
I also do Crossfit 5 times a week. Which is a hour long intense program.
62 10 years dx 12 years with major symptoms 25 years with on and off symptoms.
@bailey, I like the way you signed off with your age, number of year dx etc. It helps to identify with what you said and compare information with our own state of PD.
FAR too much SINAMET, too fast. Your doctor does not know what the hell he is doing.
do not increase , do not stop all of a sudden , slowly decrease sinamet , very important that you do not stop quickly
Run as fast as you can to a Neuroligist who is familiar with PD
I have had PD for 14 years, very severe I take 3 doses of 2 each
My doctor is a geriatrician who specialises in PD, there isn't a neuro in our region. So you think I should decrease slowly and give it up since it's not working for me? Are there others who it doesn't work for?
Something to bear in mind is that too much PD medication can produce the same symptoms as too little. Not sure if this applies to every single one but something to bear in mind. The aim is to achieve something similar to the natural pre PD balance of substances in your blood which control movement for example so it is obvious you can tip the balance and get PD symptoms from too much meds. I can't put this in more medical terminology but you'll get the idea.
It works very well for me but going from 0 to 8x day seems like a lot. When I was first diagnosed 3x/day of the 25/100 was sufficient.
Also - *very important* - the immediate release and controlled release("CR") versions might as well be 2 different drugs. The immediate release version was completely unsatisfactory for me. The CR version is smooth as silk - nice even release for many hours. It is not overly sensitive to when you take it and *no adverse effects*. Costs a bit more but worth every penny.
Thanks for that. Maybe I wasn't too clear initially but I did take a good 5 weeks or so to go from a total of 3/4 tab/day ( 1/4 3 times a day to start with) to the 6 a day I'm on now. have changed from 3x day to 4x a day to get them away from meals but still no positive effect. Definitely don't feel great with the first one in the morning. So I'd assume if I don't get a positive reaction from this then the CR wouldn't help either?
Dr wants me to slowly increase to 8/day over next month and if that still has no positive effect I'll have to go further afield to track down a neurologist. I do wonder how many people have no positive reaction to ldopa
When I tried the immediate release (IR) version I did not break them up into small increments which would have helped. As it was , with the 25/100 IR I got dyskinesia – the involuntary jerky movements what Michael Fox has, but not as pronounced. Nausea a couple of times too. But while all that was going on the PD tremors subsided.
If you are getting no beneficial effect of any kind, a reassessment is in order rather than just continuing to increase the dosage. Levodopa allegedly helps with PD bradykinesia
but since it is not helping in your case one has to wonder about the diagnosis. I found this phrase: “bradykinesia unresponsive to levodopa” in a paper discussion progressive supranuclear palsy here: futuremedicine.com/doi/abs/...
Well since I work outside on the farm I'm pretty active all the time. small though at 116lbs, I have to watch my weight a bit so that it doens't drop. It seems that you take more l/d than most., interesting how we're all so different.
All dopa medications whether allopathic viz, Sinemet or ayurvedic viz Mucana or Kapikachhu have to be taken while in empty stomach for quick action. Allopathic medication induces more problems and side effects like rigidity, slowness, dystonia, dykenesia
Your Starting dose of Simenet seems high. After 3 years of Azelect only, my Neuro prescribed one 25/100 x twice a day for 3 weeks to allow neusea to settle, then one 25/100 x three times a day for 6 months, then review.
Would you like to explore : : Volunteer for Clinical Trial -NTCELL treatment for PD
at Living Cell Technologies and NTCELL in NZ . The forthcoming Phase IIa clinical trial of NTCELL in Parkinson’s disease will be conducted in Auckland, New Zealand drawing patients from the upper North Island of New Zealand.
If you need more information about contact persons and other details I can send you.
or
If you wish to try Ayurvedic Medications, please find below details , I am on Ayurvedic medication since 2012 ( PD since 2009 ) and managing with no side effects.
I trust Vaidhyaratnam Kerala INDIA , land of Ayurveda , they do the treatment , they are growers & manufacturer of : Kapi Kachu ( Indian Mucana ) , I have taken treatment and seen their manufacturing process. They sell online & export world wide by DHL ; if you are interested please see following links , it will lead you product : Kapi Kachu Choorna ( Powder ).
It is powder form , it is packed in 100 grams box, in Indian Rs 69 /- with current exchange rate that is equivalent to USD 1.05 per 100 grams pack + DHL charges at actual. Please try to order min 20 - 25 boxes , so that DHL charges trade-off with weight. In my case for example : I take 1 TBS ( Equivalent to 7.5 grams) x 3 times per day (must be taken in empty stomach with half fresh lime juice for quick action in 30 - 45 mins you feel free from all PD symptoms, one should not eat anything during this time ), Appx. 700 grams required per month i.e about 7 Boxes per month , I generally purchase 15 boxes 2 months ( one month buffer stock ) requirement from local Vaidhyaratnam's distributor, as some times goes out of stock . If you need any help , please let me know
After food you can have 1 TBS Ashwagandharista, please google search for benifits
Thank you for your thoughtful suggestions, I'm in the South Island unfortunately but I am following what i can of the progress with interest.
I have looked into using macana but when I don't get help with using levadopa I can't see it would help either? i'll look into it again but assumed that you need some other drug like carpadopa to let the dopamine into the brain. I guess not if it works for you.
What were your symptoms. Why did you Doctor prescribe Sinemet. If it were myself I would take a smaller dose with a biscuit or juice 1/2 hour before meals and make an appointment to see your Doctor and fully explain to him your problems.
Hi Grower. Are you aware that all Pd medications, other than MAO-b inhibitors, are designed to address some of the symptoms. They do nothng to slow down or affect in any way the progression of Pd. If the Sinemet did not positively affect any of your symptoms then stop taking it before your body gets used to it. Tell your doctor you are doing that.
Sinemet is not an MAO-b inhibitor.
If you would like to learn more about Pd and medication then go to my website - reverseparkinsons.net - and see over 400 articles on dealing with Pd.
Although you don't have a neuro or better a movement disorder specialist near you, a geriatric doctor is good. That specialty is very hard to find around here in USA. I have mentioned The New Parkinson's Disease Treatment Book second edition by J. Ahlskog before. I like it because it is like having a doctor in the house. Maybe the geriatric doctor you have would be interested in buying it if you don't want to. I agree with Gymbags comments. It seems like we should be careful about adding and changing doses and keep careful records if we do. I still haven't started my diary but have several dated post-its with notes about number of hours slept, etc. I think I'll at least put them in a box today.
You can also try the "Ask The Doctor" or "Ask The Pharmacist" Forums on the website of the National Parkinson's Foundation. Both are experienced experts on Parkinsons Disease and Parkinson's medications. Either one or both mat be able to give you helpful advice. Just do an internet search for National Parkinson's Foundation.
Thanks all, it's great to have this forum to talk to. @Lu45 the symptoms that I was hoping the sinemet would help with is the slowness in my hands as I'm an orchardist and it frustrates my work. So my Dr prescribed the sinemet to try and help that, he was confident it would. My left had has most trouble but both are very slow. yesterday I had no adverse effects to the sinemet so that's a relief. Perhaps I'll stay on this dose and take away from meals with juice or a cracker as you do and see if it makes a difference. Good advice Gymbag I didn't know that I shouldn't just stop them and should decrease slowly, will do if this doesn't work.
John Pepper I have been on a MaoB inhibitor for a couple of years and do realise that the sinemet will not slow PD but would be grateful if it helped my fine motor skills. i've read your book and it encouraged me to exercise more, I'm just trying to use all the tools at my disposal. The trick is learning how to use them I guess.
I have MSA Multiple Systems Atrophyu, which is a Parkinsonism disease. They have no treatment specifically for MSA so prescribe Parkinson's meds. For some reason my dr put me on Sinamet right away. Almost 1-1/2 years later, my body seems addicted to it. Although the Sinemet has given me fluidity it has come at the cost of terrible pain! The Drs always assume it is "off time" discomfort, but it is not. It is different, I know the Difference between the two. Anyway, lately I have received a lot of links to articles and studies that suggest that taking a Carbidopa/levodopa actually increases the progression rate of the disease, because of the use of Carbidopa. So do your research. Sinemet is the wonder drug for many, but for me ite was not (im in the minority) and now I sit here and have to figure out how to get my dr to believe I'm exhibiting signs of addiction and need assistance safely getting off the sinamet. Good luck.
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