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Waywrd1

Considering Rytary

15 posts in this topic

What is everyone's "Good, Bad, Ugly" story with Rytary?  Considering it in order to get a longer "on" time during the day, as I'm currently at 3- 3.5 hours on the traditional C/L.

Thanks!

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Waywrd1,

 

I have no bad or ugly with my switch to Rytary. Actually, my move was rather smooth. To what I have read, I'm the exception to the rule. My doctor did not follow the conversion chart exactly with my case and his intuition was right on the mark. I've been taking 3 23.75/95mg 4 times a day. My next prescription I'll be doing a tiny bump to 2 36.25/145mg 4 times a day. Every once in a while I'll get some additional dystonia which I will augment with a half or whole pill of 25/100 Sinemet depending on the severity. I do get some minor dyskinesia occasionally, but it usually only lasts about 30 to 60 minutes and is mostly limited to my hand. My ON times last the 5 hours between doses the majority of the time. Good luck with your switch.

 

Dave

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Daven, thanks!  I'm actually wrestling with trying some of the early stage antagonist only meds before Rytary.  My MDS skipped right over them.  He said "I'd progressed too far into PD" before taking any meds at all (due to 2.5 years of orthopedic issues causing the same symptoms as PD.) and thus "skipped" that window of opportunity.  Yet, my PD is still "mild". 

 

To my way of thinking, I'd like to know for sure about the early meds.  I'm the one who will pay the price if it's a disaster.   If the side effects are horrendous, so be it.  Or, if it works but only for 6 months to a year, it's still less sinemet.  Then atleast I'd know, you know?

Edited by Waywrd1

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Waywrd1,

 

Good luck with the agonist. My first prescription was Mirapex. It was helpful but I struggled with the sleepiness. It got so bad that I feared falling asleep while driving. I then tried the Neupro patch which worked really well but it left these welts when I removed the patch and I was running out of places to put it. After that I switched to Sinemet and ramped up to half the dose you were taking. It's hard finding that happy medium. I wish well in trying to figure this out.

 

Dave

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I'm pretty new to taking meds, but the whole C/L vs agonist thing is not black and white.  My PD specialist said its not the C/L making things worse, its the disease progression.  As for me I tried Requip 5mg and it only made me sleepy, no better with tremors etc and a lot less sleep.  The first C/L I have been put on is Ryatry, and while I'm not completely over the tremors, it has helped a lot overall...sleeping, walking, etc.  I'm also on Azilect.  The tremors were pretty rough (whole body shaking when it was bad...excited, nervous, agitated) before, now mellowed out a lot.  Only on bad days do I feel the whole body shakes or the walking in molasses.

 

God bless you!

 

Dude

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I am a caregiver but wanted to share the good news. Rytary has worked wonder for my wife. She had extreme freezing and rigidity but negligible tremors. She was on 25/100 generic teva sinemet 2 tablets every 2 hrs or say 20 tablets a day. It did not work and her delusions and hallucinations were getting bad. We got on Rytary 61.25/245 2 capsules 5 times a day and her movements are at least 70% better. Her off time in between has reduced from complete freeze to none or maybe 15 minutes of slowness. He delusions are still there. We stopped agonist like Amantadine and lowered requip to only one 3mg tablet. In US Rytary manufacturer has a coupon for 3 prescriptions of 100 capsules absolutely free (other wise it is $300 almost for 100 caps if no insurance) so you can get and try with 300 capsules but will need 3 prescriptions of 100 capsules. Insurance has nothing to do with it at all. Your MDS / Neurologist should have the card. As of now Pharmacies dont even carry Rytary, we had to wait 3 days at CVS and no one in the city had this in stock. So 3,4 day wait is there.


Also after initial free medicine, when you will buy thru your insurance (in my case BCBS) they need pre authorization from Doctor, the process is 4- days long. Any questions on Rytary, let me know. Like any other Sinemet take each dose with One BIG glass of water. 


Edited by Optomist
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I am a caregiver but wanted to share the good news. Rytary has worked wonder for my wife. She had extreme freezing and rigidity but negligible tremors. She was on 25/100 generic teva sinemet 2 tablets every 2 hrs or say 20 tablets a day. It did not work and her delusions and hallucinations were getting bad. We got on Rytary 61.25/245 2 capsules 5 times a day and her movements are at least 70% better. Her off time in between has reduced from complete freeze to none or maybe 15 minutes of slowness. He delusions are still there. We stopped agonist like Amantadine and lowered requip to only one 3mg tablet. In US Rytary manufacturer has a coupon for 3 prescriptions of 100 capsules absolutely free (other wise it is $300 almost for 100 caps if no insurance) so you can get and try with 300 capsules but will need 3 prescriptions of 100 capsules. Insurance has nothing to do with it at all. Your MDS / Neurologist should have the card. As of now Pharmacies dont even carry Rytary, we had to wait 3 days at CVS and no one in the city had this in stock. So 3,4 day wait is there.

Also after initial free medicine, when you will buy thru your insurance (in my case BCBS) they need pre authorization from Doctor, the process is 4- days long. Any questions on Rytary, let me know. Like any other Sinemet take each dose with One BIG glass of water. 

 

I am so glad you posted this information! My husband just started on Rytary. He dropped off the prescription at the pharmacy along with the coupon for the free meds. Later when I picked it up, I knew nothing about it until I read this post to my husband. He just called the pharmacy and they are going to reimburse us! You're our hero! You saved us $903 just for this one prescription!

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Here is an in depth Paper on how to change over to Rytary from Instant Release (IR) 25/100 Sinemet. Please read and use at your own accord.

I found it very useful as it describes how to go about it with conversion and many details.  It is to be downloaded in PDF form: files.aiscience.org/journal/article/pdf/70230015.pdf

 

How to Dose Carbidopa and Levodopa Extended- Release Capsules ...
by RA Hauser - ‎2015 - ‎Cited by 1 - ‎Related articles
Apr 20, 2015 - Center, National Parkinson Foundation Center of Excellence, Tampa FL, USA ... IR were converted to Rytary according to a dose conversion.

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I am so glad you posted this information! My husband just started on Rytary. He dropped off the prescription at the pharmacy along with the coupon for the free meds. Later when I picked it up, I knew nothing about it until I read this post to my husband. He just called the pharmacy and they are going to reimburse us! You're our hero! You saved us $903 just for this one prescription!

Update: The actual refund was about $750, not the full amount of $903 but still fabulous! He is still liking the medication too! No complaints at all.

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....another interesting paper in British Journal of Clinical Pharmacology on use of laxatives for constipation and its effect (positive) on rigidity!

 

http://onlinelibrary.wiley.com/doi/10.1111/bcp.12967/full

 

Excerpt only below: (Read and use at your own accord, I found this co relation very important and it relates!)

 

Conclusions

The immediate therapeutic implication is that maintenance laxatives are disease-modifying in PD. The aetio-pathogenic implication is that change in the gut environment has a continuing and profound, but at least in part reversible, adverse effect. Actively and meticulously managed, tailored maintenance laxative schedules within fixed protocols, compared with standard clinical care of prn laxatives, is a potential tool for exploring the effect of exposome drivers and immuno-inflammatory and metabolomic mediators on objectively measured flexor rigidity.

Like other chronic diseases, PD is likely to be multistep, multifactorial, but this does not preclude a systematic explanation and interim clinical solutions. Targeting environmental influences has potential for cost-effective screening, prophylaxis and amelioration. Indeed, the misfolded protein theory of PD pathogenesis need not relegate any environmental theory to being ‘hit-and-run’ and ‘remote’ in time.

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Waywrd1,

 

I have no bad or ugly with my switch to Rytary. Actually, my move was rather smooth.

 

Dave

I started Rytary about a year ago, and the switch was all positive for me, too. My current doctor is a Movement Disorder Specialist, and apparently very persuasive with the powers that be. Consequently, Rytary is obtainable at one local pharmacy, and, amazingly, is covered by my insurance (BCN), with a normal co-pay. Unfortunately, I now struggle between under-dosed or wildly loopy, so the magic ended. Nevertheless, I have totally appreciated the benefit of Rytary.

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I have been on Rytary since last fall. I take it three times throughout the day.  It lasts 4 hours but begins to wear off the 3rd hour. I am on the 95 blue and white pill.

 

 I found Rytary very helpful.  I am not as tired as  I was on the 25/100 IR.  However, recently I have been experiencing higher levels of anxiety when I am about an hour away from the next dose.  I take a half a 25/100 pill to boost my system until the fourth hour and that is helping stop the anxiety.

 

I have two concerns with Rytary.  The first is the cost.  I could not get our local pharmacies to accept the free dosage.  My cost through express scripts is $112 every 90 days.  That is not bad, but combined with my other medications it is becoming more difficult to keep up.

 

The  second concern is my anxiety levels have greatly increased.   I read one of the possible side affects of Rytary is anxiety.  But I also know PD causes anxiety as well.  I am thinking of going back to the 25/100.  

 

By-the-way I also have DBS and wear the Neuro patch.

 

Any one have suggestion?

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I have been on Rytary since last fall. I take it three times throughout the day.  It lasts 4 hours but begins to wear off the 3rd hour. I am on the 95 blue and white pill.

 

 I found Rytary very helpful.  I am not as tired as  I was on the 25/100 IR.  However, recently I have been experiencing higher levels of anxiety when I am about an hour away from the next dose.  I take a half a 25/100 pill to boost my system until the fourth hour and that is helping stop the anxiety.

 

I have two concerns with Rytary.  The first is the cost.  I could not get our local pharmacies to accept the free dosage.  My cost through express scripts is $112 every 90 days.  That is not bad, but combined with my other medications it is becoming more difficult to keep up.

 

The  second concern is my anxiety levels have greatly increased.   I read one of the possible side affects of Rytary is anxiety.  But I also know PD causes anxiety as well.  I am thinking of going back to the 25/100.  

 

By-the-way I also have DBS and wear the Neuro patch.

 

Any one have suggestion?

My wife is YOPD now 51, dx 2004. She has graduated from sinemet generic CR, 50/250 to IR 25/100 two tablets 9 times a day to Rytary 61.5/245 highest dose with 2 caps 5 times daily. Her anxiety and paranoia is off the chart but movement is much better. We are considering going to 2 caps of Rytary 3 times a day with one 25/100 generic sinemet in between 3 times per day. She is scared, short of breath and many direct accusations. She does not take her anxiety depression medicine regularly. She is on Buspar 15mg twice daily but takes it off and on or takes 1 mg Ativan only.  Its tough!

Edited by Optomist

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I am so glad you posted this information! My husband just started on Rytary. He dropped off the prescription at the pharmacy along with the coupon for the free meds. Later when I picked it up, I knew nothing about it until I read this post to my husband. He just called the pharmacy and they are going to reimburse us! You're our hero! You saved us $903 just for this one prescription!

 

If I may ask about the escalation in anxiety or any paranoia. My wife is experiencing this but she is on very high dose.

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It took me several months to get the dose right.  I still have to take some reg sinemet b/c the rytary doesnt kick in fast enough

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