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

[brauncs]

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

[Dont_quit]

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

[brauncs in reply to Dont_quit]

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]

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 in reply to park_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

[NiccNZ in reply to park_bear]

I also only take C/L ER, 1x200/50 every 5 hours, 4 times a day. I've only been doing it for a month or so, but it's working pretty well so far.

[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 in reply to hmm777]

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

[brauncs in reply to hmm777]

Thanks, I appreciate your reply and advice

[healthabc in reply to hmm777]

how many years with pd?

[hmm777 in reply to healthabc]

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

[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 in reply to saxbike]

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]

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

[brauncs in reply to convncer]

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

[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 in reply to johntPM]

it

[brauncs in reply to johntPM]

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

[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 in reply to fxrm]

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

[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 in reply to dan1000]

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]

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 in reply to Crollo1]

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

[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 in reply to gigiwillms]

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

[PD_Investigator]

Hi Craig,

I’ve only been diagnosed for a year, but I’ve had symptoms for about six years (I’m 37). I wanted to share my experience because it might be helpful.

At first, I was taking:

In the morning: 3 pills of Mirapexin ER 0.26 mg (Pramipexole) and 1.5 pills of Sinemet Plus IR 100 mg.

At midday: 1.5 pills of Sinemet Plus IR 100 mg.

In the evening: 1.5 pills of Sinemet Plus IR 100 mg.

With this regimen, my on time lasted only about 2.5 hours per dose, giving me a total of 7.5–10 hours on "good days."

I started experimenting with different combinations of IR and ER formulations. Interestingly, I discovered that taking 2,000 IU of vitamin D in the morning and another 2,000 IU in the afternoon helps extend my on time. I ran multiple trials with vitamin D, and I’m sure it works for me.

I also tried taking only Sinemet Plus ER, but it took too long to kick in. Recently, I changed my approach by combining ER and IR forms of both Mirapexin and Sinemet, along with vitamin D:

In the morning: 2 Mirapexin ER 0.26 mg, 1 Mirapexin IR 0.18 mg, 1 Sinemet Plus ER 100 mg, and 1 Sinemet Plus IR 100 mg. 2,000 IU of vitamin D (after breakfast for best absorption).

At midday: 1 Sinemet Plus IR 100 mg.2,000 IU of vitamin D (after lunch for best absorption).

In the evening: 1 Sinemet Plus ER 100 mg, 1 Sinemet Plus IR 100 mg, and 0.5 Mirapexin IR 0.18 mg.

By increasing my daily levodopa from 450 mg to 500 mg and slightly adjusting my pramipexole dosage (from 0.78 mg to 0.79 mg per day), with the IR and ER combination, plus the vitamin D, I now get around 4 hours of on time in the morning, 3 hours at midday, and 4 hours in the evening, for a total of 11 hours on average, and up to 13–14 hours on good days.

Maybe a similar combination of ER and IR Sinemet could work for you, or you might want to test whether vitamin D has any effect on you. I’m taking 2,000 IU from Aavalabs.

Hope this helps!

Cheers

[brauncs in reply to PD_Investigator]

Thank you for your advice and I'm so sorry for your early onset diagnosis. So many things to consider with all the responses I've have received.

Cheers, Craig