Rytary Side Effects

[Fishaholic]

I been trying to figure this drug out. I’m having a lot hot flashes and sweats with severe muscle stiffness in right arm and leg and right hand with middle 2 fingers and thumb trying to curl up. This is most painful dyskinesia I ever had. I scared to go anywhere because it’s so unpredictable. When hits me I start getting hot and body twisting and right foot twisting to the left. I start walking like a gorilla on planet of apes 🦍 I get where I can’t talk and throat tightens up and I don’t want to eat. I taking Rytary 145 mg. 3 capsule hrs 6:00 am to 6:00 pm.My Nero wants me to start taking GOCOVRI for the dyskinesia. I think I too find a new Doctor.

[johntPM]

I'm not a doctor, so make of this what you will. I think your symptoms are dystonia, not dyskinesia. The distinction is important because dystonia implies you are likely to be under medicated, while dyskinesia implies that you are likely to be over medicated. Did these symptoms start when you moved to Rytary? I suggest you see your doctor.

[Parkie- in reply to johntPM]

Hello Johntpm

I find interesting your comment about dystonia possibly caused by under medication. Did your neurologist or md tell you that, or, can you share a link if you have read this somewhere?

Thank you

[johntPM in reply to Parkie-]

Ahlskog [1] explains it well:

"Because dyskinesias represent an excessive response to dopamine replenishment, they can be abolished by reducing the individual doses of carbidopa/levodopa. Note that dyskinesias are tied to the most recent dose; ...

Dyskinesias in this sense are manifest as predominant chorea, characterized by nonpatterned flowing or dancing movements of a limb, trunk, head/neck, or combinations of body areas. This differs from simple dystonia, which is often painful, like cramps. Pure dystonia, especially if painful, typically represents a levodopa-underdosed state, rather than an excessive levodopa effect. A common example is the dystonic toe curling or foot inversion often experienced by PD patients, reflecting wearing-off of the levodopa effect, or inadequate levodopa."

Reference:

[1] "Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease"

J. Eric Ahlskog

Mayo Clin Proc, 2011

ncbi.nlm.nih.gov/pmc/articl...

[Parkie- in reply to johntPM]

Thank you, John !

[Fishaholic in reply to johntPM]

JohntPM have you heard of Diphasic dyskinesia or called silly walk? Check this out invigoratept.com I think my symptoms are a lot of what described like l’m having on Rytary .

[Fishaholic in reply to johntPM]

Yes

[park_bear]

Levodopa preparations are for symptomatic relief. If this is making your symptoms worse, which I gather is the case, cut back on the dosage or revert to your previous regimen. The body twisting that you refer to would indeed be dyskinesia rather than dystonia.

What was your previous regimen and what were your symptoms at the time?

[Fishaholic in reply to park_bear]

Hey I wish I post a video of my self. I made several of them. I was doing generic 25/100 c/l 11 does 1 1/2 tab every 2 hrs. I fall off c / l and shake real bad, and would lay on hands. They wanted me to do DBS and no. That’s when hooked me to Rytary At first I could go 4 to 5 hrs on it, the does closer and closer. I went FDA there’s a lot Rytary users telling them about side effects,. I read on here they had hot flashes and pain in the right side harm and leg, I going. Cut back levodopa as the high and lows Can really screw well being. There’s too much hype about. Rytary. A-man for Rytary it works for people that take it

[park_bear in reply to Fishaholic]

I take it if you reduce your dosage Parkinson's symptoms become problematic. Rytary is one form of time release levodopa but there are others, such as Sinemet CR and generic versions thereof. Perhaps that would work better for you. Another thought would be to add an MAO B inhibitor such as Azilect or selegiline. The GOCOVRI recommended by your neuro is not a bad recommendation and I would not fire him or her over that. You are going to need to experiment to find what will work for you.

I imagine you have seen postings here regarding high-dose thiamine. If you are not already taking it you should consider it.

[Fishaholic in reply to park_bear]

I think look in high dose Thiamine.

[etterus]

I have been taking Rytary since it was approved, 3-4 years now. It’s a bit difficult to find the correct dosage so I asked my Neuro if I could get the smaller capsules and experiment with them. It took me less than a week to find that 3-4 95’s every 4 hours is the best for me. This was a dramatic difference from what she had prescribed.

[Fishaholic in reply to etterus]

How many does do you a day?

[etterus in reply to Fishaholic]

15-16 of the 95’s

[Fishaholic in reply to etterus]

The 4 hrs wouldn’t work for me. This every 3 hrs in’s working very well ether. I also doing Amandine 100 mg 2 times a day. I have some GOCOVRI 137 mg I haven’t tried it yet. I want to figure my symptoms out of the Rytary . Why mask one problem over another. I don’t think I can afford it, I think it’s $28000..00 a year.

[etterus in reply to Fishaholic]

I’m of the opinion that the least number of different meds we take is the best. My career was a physical therapist and I have seen far too many people taking more meds to treat side effects from other meds essentially killing themselves! Good Luck 👍

[Fishaholic in reply to etterus]

That's what I think too. It's weird I just got a call GOCOVRI ask me how I was doing on it. I told her I haven't started, she ask me why. I told I have to get Rytary figured out.

[Larkr]

My husband had severe joint pain both times he tried to switch over to rytary.

[JohnPepper]

Hi Fishaholic. I will probably be picked out for doing this,but isn't it time you did something else that will actually stand a good chance of improving your Pd, without any side effects?

Read up about Fast Walking on my website - reverseparkinsons.net and contact me for loads of information on dealing with Pd. It costs NOTHING but works very well!

[ConnieD in reply to JohnPepper]

John I do believe fast walking is helpful, does it lessen or solve dystonia in someone’s feet or did you not have dystonia? I ask because I do have it first thing in the morning and wonder if only Sinemet can really solve it. I read somewhere only 30 percent of people with PD have dystonia too, it was one of my earliest symptoms. Thank you, Connie

[JohnPepper in reply to ConnieD]

Hi Connie. Yes I have had dystonia for as long as I have had Pd. I notice mine the most when I am standing at the zinc cleaning my teeth (Yes, I do still have teeth) or anytime I am standing concentrating on something else.

If you consciously straighten your toes and put your weight onto them to stop them from curling, it works! I try to keep my toes out straight while I am walking and it also works.

[ConnieD in reply to JohnPepper]

Thank you John for this information!

[Hidden]

Taking Rytary is a real commitment. I experienced similar reactions to it initially. I found that the recommended dose was way too much for me. Variables to consider are your gender, weight, activity, stress, and digestion. If you think of Rytary as fuel for your engine, Imagine what would happen if, no matter what size engine you were driving or how fast you were driving, or how old your car was, you were putting the same amount of fuel in your vehicle at the same time everyday.

Rytary works for me when I am meticulous about my rest, diet, hydration, and digestion. Underdosing and overdosing are very similar. For me, curling fingers and toes, muscle cramping, and extreme dyskinesia was overdosing. It also had the effect of magnifying my fears.

Avoiding butter, mayonnaise, and any fat that can’t be rinsed off a plate with hot water might be helpful if you continue to take it. Fats seem to stop or slow it and sugars seem to accelerate it. Hope you find something that works for you.

[Fishaholic in reply to Hidden]

Thanks for your input. I took my Rytary at 3:00 within 15 min. I had this overwhelming taste in my mouth which was like my mouth was sprayed cooking oil. And the hot flash came on with sweat.And my body started to get the wiggles. It does happen at different times of the day while doing my Rytary