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
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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
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.
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!
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!
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.
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.
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 .
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.
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.
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!!) -
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