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stump

Rytary update

34 posts in this topic

I mentioned in my thread about my fall last week that my MDS is having me trial Rytary.  This was to try to combat my difficulties with mid-day sleepiness, which is pretty well correlated with the timing of my mid-day dose of instant release C/L.  If I forget to take my mid-day dose I'm fine as far as awakeness/alertness is concerned.  About 45 minutes-2 hours after taking it (whether on time or late, though it's usually worse if late) I'd get super sleepy.

 

She calculated my equivalent dose of 1.5 tabs of 25/100 C/L as being 3 caps of Rytary 95.  However she also said that with making the switch that rather than using 3 caps each morning and night, and 2 in the afternoon (as I had been taking 1.5 tabs C/L morning and night and 1.0 in the afternoon) to start out just taking 2 caps each 3x per day and then after 2 days step up to the 3-2-3 schedule.  Or, if I wanted I could go to 3-3-3, or really any amount at each dose not to exceed 3 caps at a time.

 

I figured that there was no reason to take more Rytary than was really necessary so I started on the 2-2-2 schedule a week ago and stuck with it.  For the first few days that seemed to be working great and I thought it just might work out to stick to the lower dose.  But as my body adjusted to the new medication I started to notice a few more tremors breaking through and more cramping/dystonia creeping in. Each day it got a little worse until today at work I broke down and took half a tab of instant release Sinemet to knock back some bad tremors about midway between my morning and afternoon dose.  At that point I figured I needed to amp the Rytary up a bit.

 

So, starting tonight I'm going to go to a 2-2-3 schedule just to make sure I that if I get bad nausea or anything from the higher dose of Rytary it won't happen at work.  I'll hold to that for 3 or 4 days and then, if I tolerate that well, move up to the 3-2-3 schedule my MDS originally suggested.

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Still waiting on insurance to authorize the Rytary prescription.  My samples will run out after my mid-day dose on Monday.  Options are A) drive 1.5 hours (plus traffic) each way to get more samples, B.) pay the $600+ cash price for a month's supply at the pharmacy, or C) switch back to regular C/L until insurance authorization comes through.  I asked - they can't mail the samples to me.

 

Not loving any of those options.  Gas cost alone isn't all that bad (probably $20 or so round trip), it's the time it would take to go to my MDS for the samples that is the big deal.  Traffic is soooo bad in that area that getting down there is likely to be a 2 hour ordeal (it's really only the last 20 miles that are bad) and going back north to get to work will also be bad.

 

I ain't paying the cash price.  I'll go back to regular instant release long before I pay for that, even knowing I'll probably have issues with sleepiness again.

 

I have enough C/L on hand to last for probably a few weeks, so if I go back to that I can get by for quite a while.

 

If I can double up the trip to the MDS for samples with something else that needs be done down that way I'll do that.  

Edited by stump

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Stump, my caregiver suggested writing to the manufacturer of Rytary to see if they have a prescription plan that will defray the cost of the medication. It wouldn't happen quickly enough for Monday yet would be worth looking into. It has saved her boyfriend from a $600/month copay for an entire year. That should give you enough time for your insurance to approve, Dr. A's staff might be able to help also.

 

I was there yesterday afternoon and could have picked it up for you if I had known. Unlike the office, I am open all weekend. 8)

 

Dianne

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Thanks Dianne!

 

I actually got a call from Impax, the company that makes Rytary. They are going to help out with getting everything sorted, and thought that I should be able to get my prescription from the local pharmacy on Monday. They also said the checked with my insurance and it should be just a $10 copay. I'll believe it when I see it, but this a good turn of events.

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Impax called because they do have a plan for helping folks with no/poor insurance and my MDS had me fill that paperwork out while I was there a few weeks ago.

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I got switched to Rytary back in September. Same reason daytime sleepiness. I am doing 3 2 3 per day. See MDS on 10th. So far way better then before. My copay is down to $25. Only issue now is RLS at night so not sleeping well at night. Started this month..

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Stump,

 

I switched to Rytary over year ago.  My biggest problem with my insurance is the quantity.  They'll only allow 180 for a month and I take 252 pills a month.  I have to get an override approved that's good for a year.  I have one other prescription that requires this override and the insurance company likes to play games getting the approval.  I changed policies this year to an MSA and my Rytary is my first prescription for a whopping $1725.00.  Good thing my deductible is $1750.00.  80.00 dollar copay for a 3 month supply once the deductible is met.

 

Good luck with the insurance company fight.

 

Dave

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Well, apparently insurance doesn't cover Rytary. At all.

 

Getting the application for patient assistance from Impax. Sounds like my income is really close to their limits. But we shall see.

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djack1012 - are you on Premera A/B/C or Group Health? I'm on one of the Premera plans so if you're getting coverage it's either through your spouses or you're on GH, or I'm getting bad info from Premera.

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I'm on premera A.. I use Costco pharmacy and they hashed it out with premera with the drug company help.. I filled out card got code gave to Costco and they said premera said 25 copay..

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Update my refill was $750 premera changed the plan!! Ugh.. good thing I still have samples. Gonna switch back to sinemet. I did not pay ????

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Update my refill was $750 premera changed the plan!! Ugh.. good thing I still have samples. Gonna switch back to sinemet. I did not pay

 

I got a card from Dr Agarwal when she gave me the samples that had the $25 co-pay deal on it.  There was a maximum total benefit to that, and you probably exhausted that limit.  I'm guessing Premera never covered it at all.  FWIW we're on the C plan.  Figured that as long as we don't use more than about $20k worth of medical services in a year we save money after you account for premium and deductible differences.

 

I suspect that I'll probably wind up in a similar boat as you in a few months.  If so I might try the controlled release version of Sinemet (50/200 I think).  That one might be covered by insurance.

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stump,  not to be a broken record but i use a combo of immediate release and sustained release (CR) C/L to try to get the correct dosage, rytary isn't an option.    IR/CR combos are not perfect and sometimes i have to change the dosage on the fly i'm not going ON as quickly as normal so i leave out the CR and only use the IR until i can get back to predicable ON's.  after 15 years from diagnosis I'm having to take 150mg IR every 1.5 hrs, anything over that amount doesn't help but if i take a 50/200CR i get  3hrs of on time.  if i can do ok with this god awful  dosage regime i think you might have success adding CR to your 100mg in the afternoon.  not sure why you only take 100mg, do you get dyskinesias, tremors, tell bad jokes"?  anyway, my "laws" for taking CR are:

1. can't take it if C/L is not acting predictably, i.e., not lasting as long or ON is taking longer to kick in or no ON at all.  If IR is being unpredictable CR will be worse, once  IR becomes predictable i'll  add CR back in/.

2. bioavailability of  C/R  is 60-80% if IR, so a  50/200 CR = 120mg to 160mg IR in terms of how much TOTAL gets into your system but the maximum blood level is usually less than 50% of IR but is much longer.

i know i'm making this much too complicated but knowing the basics about  each drug  will let you intelligently play around with dosing..   it sounds like 150 would give you the boost you need in the afternoon but you get some unpleasant side affects, i imagine you have mentioned this in previous posts.  a 50/200CR according to the following info will in in theory give you in 2 hrs peak blood levels that is only 35% of IR. but will give that to you for maybe 4hours. so 35% of 200mg is 70mg which might be enough.  so lets say CR kicks in in 90minutes and reaches peak dose in 120min.  so you have to calculate when your last IR starts drop off and take your  CR a minimum of 90 minutes before that time.  these are just rough numbers but it's enough to try some tests.  at your stage of pd you just have to be close, not perfect in your timing.  as far  as when to take an  IR after the CR, figure 4hrs of peak dosage then much slower decline than IR.   I'm kind of tired, if you or anyone else wants me to provide more basics let me know. 

 

i can't afford rytary but it is expensive and will just more expensive as will all pd drugs, there likely won't be a generic in our lifetimes, the manufacturing process to create sustained release drugs is IMPAX's specialty, hard to duplicate.

as with any brand name drug manufactured only at 1 plant which i think rytary is, what's your plan if production is interrupted by natural disaster, factory damaged or is shutdown by FDA who delayed approving RYTARY for a year until impax fixed manufacturing problems.  you can get a bad lot,  what's your backup plan if you run out for a week, can you just go back to regular C/L?  I'd be in a world of hurt if i couldn't get CR, I would have to go back to taking IR every 1.5 hrs, untenable, i thank god can get at  least 2 3hr ON times using  a 50/200, 4hrs using 1.5 tablets, 2 tablets gives me dysk. .  not trying to be a trouble maker but this is something neuros don't think about  when they give you samples.  they don't want to mess with CR, too much variability at times and most patients don't like having to change dosages on the fly if  you take CR but you'll be in a better position if you take the time to understand how to intelligently add just 1 CR during the day and 1 at night.   i had to study this since can't afford long lasting agonists, can't tolerate regular generic agonists, stalevo, or amantadine so that left IR/CR as  my last choice, i delayed my DBS.

s.

 

 

n healthy elderly subjects (56-67 years old) the mean time-to-peak concentration of levodopa after a single dose of SINEMET CR 50-200 was about 2 hours as compared to 0.5 hours after standard SINEMET. The maximum concentration of levodopa after a single dose of SINEMET CR was about 35% of the standard SINEMET (1151 vs. 3256 ng/mL). The extent of availability of levodopa from SINEMET CR was about 70-75% relative to intravenous levodopa or standard SINEMET in the elderly. The absolute bioavailability of levodopa from SINEMET CR (relative to I.V.) in young subjects was shown to be only about 44%. The extent of availability and the peak concentrations of levodopa were comparable in the elderly after a single dose and at steady state after t.i.d. administration of SINEMET CR 50-200. In elderly subjects, the average trough levels of levodopa at steady state after the CR tablet were about 2 fold higher than after the standard SINEMET (163 vs. 74 ng/mL).

In these studies, using similar total daily doses of levodopa, plasma levodopa concentrations with SINEMET CR fluctuated in a narrower range than with SINEMET. Because the bioavailability of levodopa from SINEMET CR relative to SINEMET is approximately 70-75%, the daily dosage of levodopa necessary to produce a given clinical response with the sustained-release formulation will usually be higher.

The extent of availability and peak concentrations of levodopa after a single dose of SINEMET CR 50-200 increased by about 50% and 25%, respectively, when administered with food.

http://medlibrary.org/lib/rx/meds/sinemet-cr/

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STUMP, if you get 50/200cr get the mylan generic, they mfg the brand name sinemet, as far as i can tell they  are the same.  don't wait, get a 50/200 RX, if it works it will remove a major problem , if it doesn't then, well, failure is not an option .  if your neuro says no then just tell her you just want a RX to take it at night instead of RYTARY to save money on rytary, i imagine a lot of people do that.

 

just being a little silly here and i doubt your neuro will write  you a RX but the old MAO-B inhibitor selegilene breaks down into a small amount of amphetamine which will give you a small boost of energy, normal  dose is 5mg twice a day but you could take just 1 dose before you take the 100mg, might preserve enough brain dopamine  to get by with your 100mg, but it might give you too much dopamine when you take 150mg.  it was the first drug i used, back then it was used a lot  in early pd and then TEVA came out with azilect in 2006 and  TEVA spent a fortune on getting neuros to prescribe it.   i like the 1-2hr energy  boost it gave  but stopped it after 1year, started mirapex.   i was very lucky to find a neuro who was willing to discuss trying any  drug/treatment and if i presented enough evidence would write me a RX. 

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1 last thing, mylan 50/200  might be more expensive than the other 50/200 generics so chains  will always dispense cheapest generic they can get, who'd thunk that, and that won't be mylan.  i deal with an independent pharmacy and they will work with me on getting generics i want. I started with ACTAVIS 50/200 a few years ago, can't remember the specifics but it must have had some side affect or some  reason that i was motivated to try another generic.  everybody is different,maybe ACTAVIS works fine for you, but when i got it it was at least twice the size of mylan.  my philosophy when trying a new  drug and your're unsure of how good the generics are spend the money to buy the brand name so at least you'll know that is an option if you like it, then try to find a good  generic, harder and harder to do as the bigger companies sell off their generics to get permission from FDA to buy more profitable drugs. 

generic 50/200CR mfg's aren't tested by FDA for CR properties, just peak blood levels compared to brand name, and they are tested on healthy people.  so that leaves the door open for a CR variability.  i'm pretty sure that what i just stated is true but i'll doublecheck.

http://www.slideshare.net/ChrysopigiVardikou/parkinson-drug-sinemetlife-cycle-strategic-plan

 

https://www.merck.com/product/usa/pi_circulars/s/sinemet_cr/sinemet_cr_pi.pdf

Manufactured by:
Mylan Pharmaceuticals, Inc.
Morgantown, WV 26505, USA
Copyright
©
1996-2014 Merck Sharp & Dohme Corp., a subsidiary of
Merck & Co., Inc.
All rights reserved.
Revised: 07/2014
uspi-mk0295b-txr-1407r003

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soccertese - I cut back to 100mg in the afternoon due to sleepiness.  I'd get so tired some days (maybe 3/5) that it was seriously hard to keep my eyes open, let alone be productive.  Cutting back to 100mg mostly cured that.  Then the sleepiness started to come back, so we tried a switch to Rytary.  So far since that switch the only time I'm sleepy mid-day is when I didn't sleep much the night before and/or I overloaded on carbs at lunch.  And that's actually been at the tail end of my dose time, not the beginning.

 

I've got a 30 day supply of Rytary coming, so I'm not in panic mode here to get something else.  I'll still get on the horn with the MDS about generic 50/200.  She has been really good about my meds so far, so I'm pretty sure she'll be accommodating.  However, I might just wait a little while to see if I can get a longer term supply of Rytary free from Impax through their assistance program.  

 

Regards the MAO-B Inhibitor, I tried Azilect about 15 months ago.  Had a pretty bad reaction to it so I'm hesitant to try selegilene.  Given the problems I had included hallucinations and short term memory loss and confusion/agitation that is quite a risk to take.

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LOL, nothing is free, they jack up the cost of RYTARY to paying customers..  just put me on ignore.

 

i assume they'll be coming out with RYTARY 2, 3, there are a few other new CR's in trial, evergreen is doing one now.  who'd thunk that 40years after sinemet's introduction we'd be wasting our time talking about C/L much less PD.   imagine if TRUMP was diagnosed with pd or someone he cared about?  we'd have a cure even if it cost trillions!

 

Intec IN 11 004

Phase III - A Study to Assess the Efficacy and Safety of the Gastric-retentive AP-CD/LD in Advanced Parkinson's Patients (Accordance)

Description
The purpose of this study is to determine whether the gastric retentive Accordion Pill™ Carbidopa/Levodopa (AP-CD/LD) is more effective than the commercially available immediate release Carbidopa/Levodopa in reducing motor fluctuations such as "off time" in advanced Parkinson's disease patients.

Who may be eligible to participate?
Subjects aged 35-85 years old, diagnosed with idiopathic Parkinson’s disease. Subjects must be taking at least 4 doses of levodopa containing medication per day with at least 2.5 hours "Off time" per day on average.

Investigator: Daniel Burdick, MD

For More Information: Marsha Merrick - 425.899.3115  MGMerrick@evergreenhealth.com

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LOL, nothing is free, they jack up the cost of RYTARY to paying customers..  just put me on ignore.

 

 

Yeah, TANSTAAFL.  I should have said "at no direct cost to me."

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Got my "free" 30 day supply yesterday.

 

Now to figure out if I qualify for year-long supply or not.  Hopefully that takes just a few days after I submit it.

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Stump,or anyone interested

 

Even if you have applied for the My Rytary Patient Assistance Program, and/or have pharmacy coverage, please contact the Impax Connect Helpline at 844-367-2928. Rytary was not covered by my insurance. They contacted my insurance and MDS,had paperwork completed, andnow it's covered. They provided me with Rytary at no cost via my pharmacy during the review

 

Stump, you may already be in contact with them since you got med at no cost.

 

I have turned into a lurker since I have developed neuropathy in my hands and feet. I enjoy reading the posts

 

Have a nice evening.

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CECE - good intel.  Once I get my "free" supply figured out for the year (a paperwork issue is slowing it down, should be all set tomorrow when I can fax them some info) I'll talk to them to see if they can get my insurance to cover it.  I really have no problem paying the normal co-pay (even at the higher level for brand name meds).  Just can't stomach paying full price cash out of my own pocket.

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Thanks Stump. It would have cost me about $1100.00 a month without insurance and we are retired. I started taking it 11/17/16. I take 12 pills a day.4 times, 2 195s and 1 145 three times a day and and 3 195s the 4th dose. I not sure if it helps because I am having Gi issues, and am scheduled for EGD scope and gastric emptying test. I am tremor dominate and still have tremors. I am unable to take 3 pills 195 mg per the conversion chart because I get dyskinesia of mouth. Have you or anyone else have side affects caused by Rytary?

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