I am currently taking two (2) 25-100 tabs of C/L every two hours, all day and all night. I set the alarm every two hours to not miss a dose. Because food (especially protein) reduces the effectiveness of the medication to a very large extent, I often times need to take even more C/L to counter my lack of movement and mood symptoms. So, in total, I typically consume thirty (30) 25-100 C/L tabs per day.
Can I get feedback from you all? Who is taking this amount (or more) of C/L on a daily basis?
I have been diagnosed with PD for almost 20 years. I believe I have tried every medication known.
I am currently connected with DBS and the doctors (neurologist & psychiatrist) are asking me to reduce the amount of C/L take by a minimum of 25% or 8 tabs daily.
This reduction is proving to be very challenging for me. From this reduction in meds, I am having severe spasms where swallowing is affected. Over-all body movement is impaired at best and in most cases completely absent. The most discouraging issue is that this titration is severely affecting my mood. I have serious bouts of anger and physical violence; I am forced into states of high anxiety and crazy fidgeting; deep depression is fixed at my core.
What should I do? My current doctors don't seem to have experience at treating someone that deviates from the issues found with the typical PD patient. This is the case with MDs from all over the USA, at very reputable hospitals.
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dboobar
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Yes this is certainly a high dose. You should get your vitamin B6 and B2 levels checked. At your level of levodopa consumption B6 depletion is a possibility. This can result in a vicious cycle of reduced levodopa effectiveness requiring more levodopa and leading to further B6 depletion. See here for additional detail: healthunlocked.com/cure-par...
Meanwhile, regarding the levodopa, if you need it, you need it. These doctors are making an unreasonable demand. I suggest getting in touch with them, very firmly explaining that this is not working, and that they're going to have to come up with something different.
Have you tried amantadine along with you C/L? My neurologist has me taking 1 capsule with my C/L . Maybe seek a new neurologist if current is not open to change.
I am nearly 20 years post-DX, and I'm on about 800 mg levodopa equivalent daily dose. LEDD tries to take into account the contribution made by the different drugs making up your regimen. Are you on any other dopaminergic drugs?
Would it be helpful to try plotting out the nominal prediction for the Levodopa equivalent dose for these doses using a tool like parkinsonsmeasurement.org/t...
This would give you a starting point for discussing changes (although I don’t know how well the prediction would match your reality)
I wonder if the doses are stacking up? How precisely do you take the doses? Could you try and expand the time by ten minutes maybe to see if that helps?
Also, have you tried controlled release versions of LD at night to increase gaps between doses?
Thank You for sharing the link for the dosage calculation tool. I will try following for me to get steady dosage level. 09:00 -1 , 10:30-0.5, 12:00-1, 13:30-0.5 etc.
As per Books a total of 1500 mg Levadopa limit allowed. But Again there is another thought in the books that one should not count on Tablets as long as one is able to have symptoms under control without side effect. If this is the situation then just do not bother about the dosage. CL medication is Gold standard for PD and is the best. As you know it supplies dopamine . Rest of the medication are supportive , they only enhance the effectiveness of CL medication - this is a brief explanation. You mentioned having connected with DBS. Does it mean that you have undergone DBS surgery . If yes it should automatically help in reduction in CL medication if correct stimulation parameters are found.
With regards to Neurologist, I can say you are the better judge or your care giver is the better Judge . If you understand function of each medication well , you can be a better neurologist. Unfortunately each PD patient case is different, it is hard for them manage the symptoms without a Neurologist. What one needs is a Movement disorder specialist . These people are more concerned about PD patients than a Neurologist. This is my opinion.
That’s an enormous amount of CL. You should augment it by using slow release for night time, through some Mucuna Pruriens into the mix and get in line for the new subcutaneous pump.
Do you have dyskinesia? I was taking 1.5 10–100 every three hours and that was a lot. I recently had DBS surgery and now I’m down to two per day. I had it done at Mt. Sinai New York and I can give you my neurologist who is nationally known. After 12 years of Sinemet the site effects outweighed the benefits. The PD center will tell you if you are a good candidate for DBS.
Hi! My husband, James, is 60 and was diagnosed with Parkinson's in 2015. He doesn’t have tremors but has a terrible time with stiffness, rigidity, freezing, and pain.
He has used Zandopa for approximately 7 years.
He was taking C/L 25/100 every 2 hours, but he had very little on time, if any.
After research, we decided to try Zandopa. Zandopa has been a lifesaver for him (although the taste is horrible). Without it, I truly don’t even know if he would be alive.
James uses:
Zandopa Powder (we purchase on Amazon) every 1 1/2 - 2 hours. We had to experiment to find the right dose. We settled at .142 ounces of Zandopa.
I have a small kitchen scale that I weigh every single dose. I also have a small sifter that I sift the powder because it has hard little chunks in it (I don’t know what they are but they made swallowing the powder difficult).
I mix the Zandopa with cold water and James chugs it quickly. I found small cups on Amazon that don’t leak.
He also adds at the same time, 1/2 tablet of 25/100 C/L. This prevents the nauseousness from the L-dopa in the Zandopa and also seems to help in general with the extra Levodopa.
I know everyone is different and what works for one person doesn’t work for someone else. But this is what works for James.
So sorry to hear the difficulty you facing As far as dosage the paper below suggests the max effective amount is 9 100/25 tablets a day - usually divided over 3 doses. Taking each dose 1hr before eating and 2hrs after eating. The paper suggests that higher doses have little incremental benefit.
I think this paper assumes that the patient is eating three meals per day
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