High Dose CL ?

[Furch]

I am often puzzled by the high dose her neurologist/ movement specialist has her taking. I have not found anyone taking this high of dose: 8am: 25/100 CL x 3

11am: 25/100 CL x3

2pm: 25/100 CL x3

5pm: 25/100 CL x3

8pm: 25/100 CL x3

11pm: 25/100 CL x 1 but then a Rytary along with 3mg Melatonin.

Her other routine meds:

Lexapro 10mg, levothyroxin 100mcg

Vit D1

Celebrex 200 mg

B complex

Mybetriq.

She demonstrates no side effects. No dystonia currently. However prior to her 2nd time of diagnosis of PD she was seeing a neurologist for botox injections for dystonia of left leg and it resolved after her botox shot and never returned. She is oriented, alert, sharp as a tack. Other than occasional depression and episodes of impatience and anger. She has NO motor or no motor effects from the CL?. Her main problem with her PD is unexpected freezing of gait and slow movement. Very mild bilateral hand tremmor. Even had a Datscan to confirm a severe decrease in Dopamine. Sorry this is such a long reply but I really question how she can be on such high dose without side effects...

[Juliegrace]

has she tried taking a smaller dose? If yes, was she fine or affected adversely? I would happily take a high dose if I could function well without side effects. Count your blessings.

[Furch in reply to Juliegrace]

Yes smaller does does not see effective. He tried her on Neupro patch that made her like a zombie. Then they tried kynmobi for off times which the first 2 tries did nothing and the last dropped her pressure she became lethargic. So she was diagnosed 2017 then 5 myths later shecwas told she had a spinal issue so we went on a roller-coaster of emotions. She developed a sudden episodic problem.of dystonia to left lower leg. Went to the other neurologist to get botox injections at which time he told her to do several motions and to walk. Then he told her that he was certain she had PD and started her on CL. This was a neurologist from a different group. So happens that this new neurologist was also the movement specialist who was actually recognized the the NC PD association. So that's been her neurologist/movement specialist since then....thanks for your reply

[park_bear in reply to Furch]

Yes it is a high dose but if a smaller dose is not effective you have your answer. High doses of C/L consume vitamin B6 at a high rate - her B6 level should be monitored. If she needs to supplement she should use the P5P version of B6 because the Pyridoxine version is toxic.

Also, never any reason to apologize for a detailed post. It is the short cryptic posts seeking help that are problematic.

[move4parkinsons in reply to park_bear]

Great input thanks what does the b6 do for you?.Where do you get the P5p version.How do you know how much to take?

[park_bear in reply to move4parkinsons]

B6 is responsible for over 100 different enzymatic reactions so you do not want to run out. Details here: healthunlocked.com/cure-par...

And here: healthunlocked.com/cure-par...

P5P Is readily available at Amazon and elsewhere

[Gymsack]

I notice she is taking a B-Complex which may play an important role in her well being . The only thing that I think she might need to add is a good chewable geriatric women's multi-vitamin with minerals.

I am taking slightly more CD/LD than she is but l can not boast such good condition and the song "leave well enough alone " went though my head. Keep up the good work, A caregiver of merit .

[Bunny622023 in reply to Gymsack]

Agree also Gymsack, that sometimes it's best to leave things alone.

[pdpatient in reply to Bunny622023]

The only thing that works against that concept is natural human greed. 😂😏

We always want too much of a good thing.

[Furch]

Thank you all for the response and sharing your opinions and experiences. Especially Gymsack since you are taking a higher than usual dose as well. Park bear I will work on getting her some Vit B levels.

[pdpatient]

I don't know that it's too high a dose. I personally take about 13 tablets per day and sometimes as much as 17.

Unfortunately, the only reference of a so called upper ceiling is 9 tablets per day which used to be the standard that insurance companies used to follow about until a decade ago. These days, I don't think they do anymore.

I must also add that I am taking 40mg Nourianz as well which is tremendously helpful to me and gives me more on time. Maybe ask your wife's doctor if he is willing to prescribe.

[Furch in reply to pdpatient]

Thanks I will definitely speak to neurologist about Nourianz.

[pdpatient in reply to Furch]

It's made by a Japanese manufacturer that works via a different pathway. Taken just once per day and comes in two doses. 20 mg and 40mg.. They usually start you off with the 20.

I was talking 20 tablets of 25/100mg of Carbidopa/Levodopa before I was prescribed with Nourianz. Now it is just 13 most days.

Good luck with everything.

[Furch in reply to pdpatient]

Thanks

[Bunny622023]

Hi Furch, my husband (61 yrs) is on 2100mg of C/L per day. So I don't find the above high dose at all. I know other PDers on higher than my husband as well. I think meds are very specific to each person. I don't have a lot else to say on this just that its not a high dose to us, or from what our Neuro has said. 2100mg of C/L per day for my husband does not produce side effects most of the time. All depends. If he has spent a lot of energy exercising he may take an extra 1/2 dose of C/L 100/25, which MAY cause mild dyskinesia. This is after 25 years of Young Onset PD which I need to say, because progression and direction of the disease can be quite different. He also has DBS for 10 years now.

[Furch in reply to Bunny622023]

>so great to have an opportunity to be part of such a informative and caring group. You can read all day various medical based reference and articles. But nothing is more informative than people who are actual victims of this disease. Thanks for sharring.

[Furch in reply to Bunny622023]

Thank you for the information and sharing

[richardo123]

Just an fyi I take 3 c-l at 9 and noon then 2 1/2 at 3 pm and 6pm . This is do to my progression.

[BeedieBird]

I take 2 every 4 hours. 800 mg c/l a day. and sometimes wake up at 3 am or so and need to add another so I can move and stop the painful cramping. If she is doing well, seems she is on the right dosage.