What is your experience with Rytary, and ... - Cure Parkinson's

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What is your experience with Rytary, and is it possible to mitigate dyskinesia?

Beckey profile image
24 Replies

In the past 3 or 4 months I started experiencing an intense dyskinesia in my legs and feet. It's just exhausting. It has become agonizing to stand, walk -- last night it kept on after I was lying in bed.

I moved to Rytary, and now I take 2 23.75-95 mg. capsules, 4 times a day. I don't know what one has to do with the other (if anything). Can anything be done to mitigate this horrible side effect?

Don't tell me to see a movement disorder specialist; I already do, and I'm quite aware that HealthUnlocked does not substitute for a doctor's care.

Thanks, y'all.

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Beckey profile image
Beckey
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24 Replies
parkie13 profile image
parkie13

hi Beckey,

There is a good discussion of dyskinesia on PDrecovery.org in doctor Hadlow's book Once Upon A Pill. You can download it for free on her site. She has many references in the book, however if you look on page 252 is kind of starts there.

Some people like her some people don't, so if you don't like her just delete it. Hope it helps

Pdrecovery.org

Mary

Beckey profile image
Beckey in reply toparkie13

Thanks, Mary.

laglag profile image
laglag

Hi Beckey. I'm not on Rytary but I do take C/L, have for around 10 yrs. Last year I started having pretty bad dysenkia because of a stressful time I was going through and my meds weren't kicking in as soon so they upped my dosage to 7 or 8 and be started me on Entacapone. It gave better on times but dysenkia got worse. Entacapone is supposed to help dyskensia but it made mine worse. So they suggested something new which is called GOCOVRI. It helps dyskensia really well & it also helps "on" time last longer. I really like it. It's basically Amantadine Ext Release, a little more dosage. One bad thing about it, it's really expensive. I believe Medicare pays for some of it. Because I'm under 65, I get financial assistance so I pay $20/mth. The price normally is at least $2,700.00/month.

Enidah profile image
Enidah

Beckey, I'm so sorry to hear you're dealing with that. I'm in the same boat and I am reading anything I come onto that might be helpful. That nighttime dyskinesia is horrible! I'm super careful not to take too much levodopa after 5 p.m. the time release C / L really seems to set it off if I take too much.

I am trying to be intrepid and looking into DBS now. It won't be very convenient because the closest one I would go to is a hundred miles away so I will have to enlist helpers. Also I hate stress, as we all do, so this should be fun, ha!

I will pass on anything I learn that seems helpful. Good luck!

Beckey profile image
Beckey in reply toEnidah

Stress is like poison. I started doing guided meditations with Deepak Chopra. Here's hoping!

Zella23 profile image
Zella23

My husband started on Amantadine as his dyskinesia was getting a real problem for him on Modopar! He’s cutting down on Modopar but the Amantadine was amazing in treating the dyskinesia. I realise it doesn’t help everyone but apart from a few side effects it has been worth it.

Personal experience is that eating or drinking sugar while taking rytary makes dyskinesia much worse. Processed foods frequently contain high amounts of sugar.

If you take any other drugs, you may want to use a levodopa calculator to see if you are taking too much levodopa for your age, gender, and size.

Walking alternately on the toes, then heels, then backwards seems to help calm the dyskinesia sometimes. Good luck!

Beckey profile image
Beckey in reply to

Wow. I'll try that.

Blackfeather profile image
Blackfeather

I have found that Rytary stacks, so toward the end of the day it may help to lower the dose. This has helped me with dyskinesia.

Beckey profile image
Beckey in reply toBlackfeather

Thanks.

Kevin51 profile image
Kevin51

Hi Beckey. My dyskinesia began about a year ago. It is definitely associated with taking LDopa. I went cold turkey and my involuntary movement stopped after a 36hr washout. My tremor got a lot worse of course! I stopped taking any immediate release LDopa and went entirely onto continuous release, taking them every 8 hrs so there was no stacking. My neurologist was happy with that. My dose is low-ish - 300mg CR per 24hrs and I do get some dyskinesia but it is manageable. More tremor than I like, of course without the IR. I found that any amount of IR would trigger the dyskinesia un-manageably so gave up taking it entirely. My exercise routine helps compensate for low meds I am sure.

Beckey profile image
Beckey in reply toKevin51

Thanks, Kevin. Much appreciated.

lenamm profile image
lenamm

It's extreme but I had focused ultrasound guided pallidiothalamic tractotomy in Switzerland last year after developing severe dyskinesia - couldn't walk stand work drive or be comfortable. I have zero dyskinesia on my lesioned side now and am able to work again. Hoping to have side two lesioned this year (the border is closed at present) although even my dyskinesia on that side is way way better.

healthabc profile image
healthabc in reply tolenamm

Great to hear! Who did the FUPT surgery and where in Switzerland?

lenamm profile image
lenamm in reply tohealthabc

Sonimodul is the only place in the world doing PTT commercially (they are in Solothurn)

Beckey profile image
Beckey in reply tolenamm

Yow!

Fishaholic profile image
Fishaholic

Hi Beckey, I ehave the same problem with Rytaty it does cause intense dyskinesia. I take the145mg 2 capsule 4 times a Day it’s crap shoot but dyskinesia comes on every day. I notice What I eat makes it unpredictable to much protein killer. I just started GOCOVRI 137mg 1 capsule at bedtime .

I was taking regular amandine 2 100mg twice a day. I think that’s stupid going from 200mg to 135mg.Thats what happens when Dr pass change of order s to The head nurse then she passes it some one else . I just keep exercising and fight it .

ladyaudree profile image
ladyaudree

I was prescribed Amanatine and it helped. When the dyskenesia lessened I was able to reduce the amount of 25/100 c/l from 8 tablets to 4. Also look at some of the dietary comments. I have less of every bad symptom since i gave up meat, fish and dairy protien (vegan diet) and cut back on sugar.

Cagey84 profile image
Cagey84

Hi Beckey, like some others above, amantadine is fantastic for my DKs.

JoeKev profile image
JoeKev

I take1 mg Rasagaline AM. I take one 23:75/95 Rytary AM. That’s it. If I take another Rytary PM I get dyskinesia. Even though it’s mild I can’t stand it. You ask, Are you presentable. Not really but I’d rather deal with the tremor and shuffle. The more I lower the dose the less I need.

Beckey profile image
Beckey in reply toJoeKev

Interesting.

JoeKev profile image
JoeKev

I left out that I take 1000mgs of B1 AM and 1000mgs PM

Beckey profile image
Beckey in reply toJoeKev

I just ordered some!

lmtwa profile image
lmtwa

HI Becky

77 m - dx PD 5 years - searched for meds for 3 - no success including c/l. Found a brilliant doc in Bethesda , put me on RYtary - 18 months ago - ended up with 36.5/145 2 - 4x day plus rasagaline 1mg 1x

My wife will tell you the results were incredible. walking 2 or 3 x week plus Rock Steady Boxing 3x (yea Cynthia!!) -

Lloyd

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