Er or CR C/L Dr response to change

[RS313]

Hi all,

I recently asked my Neurologist to switch from rapid release C/L to either Er or Cr and his response was Why would i do that if it isnt the normal regiment for parkies. He said it is a very expensive med and that only inexperienced neurologists prescribe this because it doesnt work as well as the rapid release! I have only been on C/L for 8 months and already have some dyskensia and on a very low dose too. I only take 3x a day 25/100 C/L. I am confused because so many on here say it works for them.What should i do now? He isnt listening to me. I am so frusterated and feel like i am still taking to much meds. Is this common to get dyskensias this soon and on such a low dose?

[M_rosew]

If you feel this Neurologist doesn't listen to you, you probably need a different Neuro. I'm not sure there is a 'normal' treatment that suits all. Have you tried changing the time you take the tablets? Can you find a Neuro who specialises in PD / movement disorders?

[RS313 in reply to M_rosew]

This Dr is a movement disorder specialist and although i am sure he knows what is best it isnt best for me. He is not easy to talk to and seems to be stuck on what he wants to do even if it isnt working for me

[park_bear]

He has no idea what he is talking about. Generic versions of Sinement CR are cheap. See here - 30 cents/pill: goodrx.com/sinemet-cr?drug-...

Does your dykinesia flare after each dose of the rapid release version? If so that is a sure sign you are getting overdosed from the rapid release. Dyskinesia at this low dose I believe is unusual but everybody is different. If you are a petite woman a given dose goes a lot further than for a big man.

In any case fire this MD for not listening to you, for being unwilling to help you with your dykinesia, and for being an idiot: using his terminology, "doesnt work as well" is exactly what you need because the IR version is working too well.

[RS313 in reply to park_bear]

Yes i know its cheap i actually was on it at first by error of my pharmacy and he got really mad and said this isnt what i prescribed! then he switched me quickly to the IR and it has been horrible now with these weird jerking of my hand and leg. I do believe i will try someone else because i shouldnt be having dyskenisia this soon in the game and no i am not thin (I wish lol )

[park_bear in reply to RS313]

The pharmacy mistake is a clue it is commonly prescribed. How was your dyskinesia with the CR version?

I myself experienced dyskinesia soon after diagnosis by taking the IR version of C/L 50/200 (bears are larger creatures ). It is not a bad sign, it merely indicates you have too much dopamine and your meds need adjustment..

[RS313 in reply to park_bear]

i didnt have it with the ER version at all and felt way better!

[lempa_nik in reply to RS313]

Robyn, If ER satisfies you, well and good. But if not, you may want to try Mucuna Pruriens, which has repeatedly shown--in animal models and with humans--its overall superiority AND less dyskinesias than the standard levodopa-based drugs. Here's a recent human trial:

ncbi.nlm.nih.gov/pubmed/286...

" RESULTS: When compared to LD+DDCI (Dopa Decarboxylase Inhibitor), MP-Ld (Low dose) showed similar motor response with fewer dyskinesias and AEs (Adverse events), while MP-Hd (High dose) induced greater motor improvement at 90 and 180 minutes, longer ON duration, and fewer dyskinesias. MP-Hd induced less AEs than LD+DDCI and LD-DDCI. No differences in cardiovascular response were recorded.

CONCLUSION: Single-dose MP intake met all noninferiority efficacy and safety outcome measures in comparison to dispersible levodopa/benserazide (a combo similar to Sinemet). Clinical effects of high-dose MP were similar to levodopa alone at the same dose, with a more favorable tolerability profile."

[park_bear in reply to lempa_nik]

How does one mitigate the nausea? I am unable to use mucuna for that reason. The full text of the study claims no adverse effects whatsoever from mucuna, which makes me skeptical since nausea is commonplace.

[rjpinette in reply to RS313]

My husband took the straight C/L for a month or so and couldn't get off of it fast enough!! We also found out how to take it after that. One hour before you eat protein of any kind take the c/l or eat your protein and 2 hrs later take the C/L.. You don't get the full affect of the pill if you don't follow these instructions. You can have toast with a little bit of butter on it and/or jam too - that's OK. My husband is on C/L ER (neuro said it would work better than the full on since it was over time). He does 5 times a day 2 pills of 25/100 and before bed 50/200 - 1 pill. Seems to work just fine and he's more "with it" on this dose. Very active and engaging.

[rhyspeace12]

Neurologists can be a strange bunch. they certainly don't like their ideas questioned and don't like spending any time talking. Our first one wouldn't return our calls after the testing was done, the second left town with two weeks notice and took all of our medical records, and the third, and current can be very unpleasant ,depending on what kind of a day he is having, which most often,isn't a good one.

[parkie13]

Just a suggestion, I'm sure that you have a GP that you go to see, maybe you could see him and ask him to change to CR version. Seeing a neurologist can take months sometimes.

[DianeF]

My neurologist explained to me that cr or er carbidopa/levodopa actually delivers a smaller but more constant amount of medication across time. I have been very happy with it. He did tell me at my appointment last week that recently there was a problem with some of the drug manufacturers and there was a shortage of it here in the States for a bit.

[Juliegrace]

Low dose, early dyskinesia is less common, but happens. I experienced it at 4 months on 2--300mg c/l per day. I get it on both sides of a med cycle so I take very small doses - 1/2 & 1/4 25/100 pills - almost hourly through the day. Rytary did not work for me and I have not tried CR or ER. I take 250-350mg total per day. It's a pain in the behind to be tied to the clock, but it gives me some control over the dyskinesia. I tried the "Silvestrov Protocol" using 98% pure mucuna, but it gave me dyskinesia with as low as 40mg (I measured using a jeweler's scale).

[Cbgs]

I've been on IR since dx in 2012

I switched to ER in September

And I wonder way I hadn't done it sooner!

I do take Amantadine also to lessen the dyskinesia

Be well

C!

[RS313]

Well Everyone,

I have given my Neurologist the boot!

One thing that i wont deal with is a Dr who doesn't listen to me... I know my body and even if he specializes in this disease i still have a voice and doggone it i want to be heard. I wasn't able to get an appt until Jan(with new Neurologist) but i will wait rather than be ignored. TY all for the advise and comments they were all very helpful.This is a wonderful group in which i have learned a lot from and respect the advice given here.

[JANVAN in reply to RS313]

Interesting...., giving your neurologist the boot (that's the expression ?) :-).

I will see my neurologist Tuesday, I will also ask him to take a Sinemet ER before sleeping.

I sleep well, I wake up also very good, but after an hour the symptoms (stiffness) are starting to come through. And than taking a pill, it lasts to get my mobility back.... I suppose my dopamine-level drops to deep in the night (?)

(although I don't understand why I feel me relatively good the first hour after awakening...)