What steps to titrate down c/l safely? - Cure Parkinson's

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What steps to titrate down c/l safely?

13 Replies

I am going through dose adjustment. I lowered B1 to one gram daily.

I need to determine the safe way to titrate down my c/l.

Currently two tablets, 25/100 IR at six times a day/night. 24 hrs.

13 Replies
Smittybear7 profile image
Smittybear7

I'm in the process titrating down CL. I am currently on 1 + 1/2 tablets in the morning 1 in the afternoon, one in the evening. My neurologist told me to eliminate the half pill in the morning. Monitor for 3 to 5 days and monitor how I feel. I was starting to get some tightening of the muscles in my shoulder and I felt I was on to high of a dose. . Today was the third day that I cut the half pill. The first day I became much more jittery a lot of Tremors. The second day was a very calm day. Today was another jittery day. That was a directions from my neurologist how to cut back. Hope maybe it helps.

in reply to Smittybear7

Yes. It is very close to Dr. Ahlskog's "For patients with no improvement with any of the doses: You can reverse this process, decreasing your dosage every few days down to zero, or whatever dose seems to be providing benefit."

bassofspades profile image
bassofspades

This is a great question for the doctor that prescribed it for you. Beware if you ask on this forum, you might get dangerous advice! Be safe!

in reply to bassofspades

Dr. (MDS) Deligtisch, "Increase the time interval between doses - if you are taking every 3 hrs then stretch it to 3/25 or 3.5 hours. This should allow you to reduce the total number of doses every day."

bassofspades profile image
bassofspades in reply to

Great! Can I take it this means you are doing better?

in reply to bassofspades

Only in the B1. I adjusted it and had improvement.

Levodopa, big trouble.

Copy from internet source:

“For patients on high doses (over 1000 mg levodopa), we recommend reducing levodopa by approximately 100 to 50 mg per day, (for doses over 500 mg levodopa) 25 mg to 50 mg per day, and for lower doses (less than 500 mg/d) 25 mg less every second or third day”

daughter-Advocate profile image
daughter-Advocate in reply to

is that 1000mg over a week? or over a day?

Nitro53 profile image
Nitro53

Roy, if you don’t mind me asking how are you doing on 1gm of B1? I thought you used to promote high doses.

in reply to Nitro53

4 years ago, hi dose was correct. Dr Colangeli said I not lower dose. Since much has been learned.

I have been working my dose levels. I had mild but noticeable improvements

daughter-Advocate profile image
daughter-Advocate in reply to

did you do a vitamin b level test to know if you should be on a reduced dose? if the results came out normal range, does pt still have to take it? is there any cons to taking b1 when you don't need it?

koshca profile image
koshca

I stopped it cold turkey, no problem.

gl2238 profile image
gl2238

I have tried to titrate down from 1500 mg Levodopa, 25-250 SINEMET but increasing stiffness remains in my legs. Would like to try Madopar, for less GI issues but cannot get in US? Seems CL high dose is toxic? No good answer from multiple Neuros including Cedars Sinai. Waking every night with Dystonia 2-3 times in the PM is terrifying. Health care for geriatric’s is nil in the US.

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