Has anyone had any success combining C/L ... - Cure Parkinson's

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Has anyone had any success combining C/L IR with C/L ER.

brauncs profile image
24 Replies

Recently my Neurologist wrote me a prescription for Rytary, however it's not covered by my drug plan and was going to cost me $883.00 per month, so I cancelled it. I'm in my 10th year with the diagnosis and it's getting pretty difficult to minimize the off times with just the C/L IR. Any advice would be greatly appreciated.Cheers, Craig

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brauncs
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24 Replies
Mountaindo profile image
Mountaindo

I will oftentimes take IR between ER to gap off times. I usually end up with dyskinesia though.

brauncs profile image
brauncs in reply toMountaindo

Yes, it amazes me how fast I go from dyskinesia to Bradykinesia especially nearing the end of the day. Next visit with my neurologist I will ask if he can prescribe me a months worth of ER. Thanks for the response

park_bear profile image
park_bear

10 years since diagnosis here also. Rytary did not work for me. I take strictly C/L ER, but I only take four doses daily at most. Stacking is a concern if you take it often. No IR. Further detail about ER vs. IR here: healthunlocked.com/cure-par...

brauncs profile image
brauncs in reply topark_bear

Thanks for the wealth of very interesting and helpful info. The one advantage I have is my left knee goes into a kind of lock step when my levodopa levels are needing replenishing so I kind of have an early warning system , however I will definitely talk to my neurologist about giving me a prescription for a months worth of C/L ER to give it a test drive. Thank you

hmm777 profile image
hmm777

Yes, that is exactly my prescription. I take one 25/100 IR and one 50/200 ER, at the same time, three times per day. It has worked very well for me.

Ksemple1981 profile image
Ksemple1981 in reply tohmm777

as well. I take the CR along with the IR and they out far I have no more.

brauncs profile image
brauncs in reply tohmm777

Thanks, I appreciate your reply and advice

healthabc profile image
healthabc in reply tohmm777

how many years with pd?

hmm777 profile image
hmm777 in reply tohealthabc

9 years since diagnosis. I definitely had it for quite a while before that.

saxbike profile image
saxbike

My wife has had PD for seven years and takes one Rytary and half of one C/L. It has worked well, but some days are better than others. Dyskinesia has been minimized, but occasionally, it rears its ugly head.

brauncs profile image
brauncs in reply tosaxbike

Thanks for your advice but for now I can't afford Rytary however I was told by my neurologist that Rytary will be available in a generic form this coming July so we will see how it's priced then.

convncer profile image
convncer

I’m Rytary. It’s definitely better. Because careful. Watch your diet

brauncs profile image
brauncs in reply toconvncer

Thank you and hopefully when it goes generic in July I might revisit giving it a go.

johntPM profile image
johntPM

Rytary is L/C (levodopa/carbidopa) with special technology to slow down the absorption of the levodopa. You can get similar effects by taking more immediate release, smaller doses of L/C IR.

neurotalk.org/parkinson-s-d...

The following regimen approximates the pharmacokinetics of 390mg of Rytary:

Dose 1: 100mg IR C-L, 0 hours

Dose 2: 60mg IR C-L, 1.5 hours

Dose 3: 60mg IR C-L, 3 hours

Dose 4: 60mg IR C-L, 4.5 hours

You can get more out of your levodopa by using a COMT inhibitor, this is Stalevo.

Lheinlel profile image
Lheinlel in reply tojohntPM

it

brauncs profile image
brauncs in reply tojohntPM

Appreciate the advice, thanks. PD is such a complicated disease, as you well know😑

fxrm profile image
fxrm

A little more than 10 years since diagnosed. Symptoms getting bad slowly. 5 pieces of L/C 100/25 IR a day gradually not good enough to control off time fatigue, changed a few months ago to take 2 200/50 CR and 1 to 1.5 100/25 IR. Total dosage more or less the same but feel better: lesser off time, dyskinesia not bad as before. Taking 1 1mg Rasagiline everyday as well as before.

brauncs profile image
brauncs in reply tofxrm

I am also taking 1mg of rasagiline per day. Thank you for the advice 👍

dan1000 profile image
dan1000

Hopefully one of the delayed release C/L will be covered by your plan, or perhaps by some kind of "drug assistance program" that seem to be part of this crazy Pharma ecosystem. In addition to Rytary, there is now Crexont (same company, longer release time).

I have found that a smaller, locally-owned pharmacy has been more responsive to finding interesting ways to help me get drugs paid-for, as opposed to the major retailers. Perhaps they can help you too.

For me (9 years in), I rely on Crexont (which is new this year -- I used to use Rytary). I pop half an IR 25/100 C/L if I'm having a meaty meal, or if I feel "off". And if I have a deeper crash, I use Imbrija to provide relief within a minute or two (inhaled).

Dan

brauncs profile image
brauncs in reply todan1000

Yes, my plan does cover C/L CR and it covers imbrija, however that has a very expensive co-pay. My Doc gave me some nearly expired samples of Imbrija and I'm using it only as a rescue. I recently read that an Austrailian company has come up with a levodopa nasal inhaler but unfortunately that would have to go through the black hole called the US FDA Thanks👍

Crollo1 profile image
Crollo1

I am on Rytary and do not pay for it. I am on the Patient Assistant Program because I couldn’t afford it either. Maybe have your doctor check into that for you. Best of luck

brauncs profile image
brauncs in reply toCrollo1

Yes, we checked into that and didn't qualify. Thank you for your reply 👍

gigiwillms profile image
gigiwillms

10 years dx here too. My MDS saw that Rytary wasn't covered by my insurance as well. So, he prescribed me 1 each 4x per day. Now I am up to 2 IR and 1 ER 4x per day. My problem is c/l works well for me, but not very long at all. I can't seem to get enough of the ER to make it worth while by itself. Even with my "Jerry rigged" version of Rytary, I'm off quite a bit during the day.

brauncs profile image
brauncs in reply togigiwillms

Yes, that is the mystery of C/L therapy I guess. Thank you for the reply 🙂

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