I am facing an unique situation. I am on Rytary and I find that a few minutes after I have swallowed my pills, I experience dyskinesia. My doctor is puzzled and can’t explain it. Has anyone else seen this reaction?
Instant Dyskinesia??: I am facing an unique... - Cure Parkinson's
Instant Dyskinesia??
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pdpatient
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Yes, maybe I may have. Does it happen more late in the day, maybe your last dose before going to bed? If so I'll tell you what it may be, but I don't want to guess, so I'll wait for your answer.
No. The first dose of the day actually.
Rats. For me, the answer was that thee meds were building up during the day and I was over medicated. I'll think about what it might be.
I've been taking Rytary for over 4 years, and I've had to adjust my dosing schedule a few times. The latest has been to go at least 8 hours between my last dose of the day and the first dose of the next day. For a long time before this change, I was waking up in the middle of the night to take a dose. That led to being over-medicated. Getting rid of my mid-night dose (more like 2-3 am) wasn't easy, but I kept at it, and in the process I cut my doses to 5 a day, down from 6, yet I feel better than I have in years.
Now that I'm not swamping my brain with too much dopamine at night, I'm pretty sure that my brain is still making some "native" dopamine over this 8 hour period. I think that it's important to give your brain a break from it so it can clear out the "external" dopamine and allow whatever "native" dopamine the brain can still make to be made. If you're taking a dose half way through the night, my first suggestion would be to try taking this 8 hour break.
f your brain makes some dopamine while you sleep, then maybe you have to use it up before taking your first Rytary? These days, I go for a short walk after getting up and take my first Rytary when my PD symptoms start. It's what works for me
Excellent suggestions and it makes great sense. I think that my troubles are caused by excessive dopamine supplemented into the brain due to the reasons you’ve mentioned and others have pointed it out as well.
I thought the maximum that I can go between doses was 4 to 5 hours as suggested by the manufacturer. I will try and see how far I can go through the morning without taking the first dose. I will work my way up from there.
The doctor did offer to keep me under observation for a day at his office. However, he wasn’t sure if the insurance would pay for it. So I have had to do the medication adjustments at home but take my results back to my MDS and hope find the best.
I get dyskinesia within 15 minutes of my first dose. I take c/l 10/100 IR. I don't take meds after 6pm and take my first dose usually around 9:30am on an empty stomach.
How do you cope with it?
I have tried different things: taking small doses closer together (1/4 & 1/2 pills); I tried Rytary but it didn't work well for me. I pretty much have some level of dyskinesia while I am "on." I don't take meds at night; if I did I would never sleep.
Has it only started since you've been taking Rytary? Maybe changing your schedule may help? Rytary was so unpredictable for me. I opt to take my meds every two hours if it's a whole pill (10/100) or on hourly intervals when I take a half pill. It's a pain to have to live by the clock but it gives me the best result.
No. I have been having issues with every form of levodopa. Just worse with Rytary.
I take the 10/100 because it gives me less dyskinesia than the 25/100.
My mom also always has some dyskinesia.
Do you know why the 10/100 would give you less?
It is less carbidopa... not Levadopa.
Maybe I can suggest this to my mom’s neurologist.
My mom takes 1 1/2, 25/100 every 2 hours.
I think the lower level of carbidopa delivers less levodopa. I can't remember the exact explanation but I know it works better and is more predictable for me. It's an inexpensive, generic prescription so it's easy to try.
Yes, sounds like me. Every form of C/L that was prescribed I suffered with. Tried Rytary. I was standing talking with someone at work and suddenly my arm flung up in the air. Scared the crap out of me. That was the 1st & last time I tried Rytary. But, what I have settled on and been having good luck with is Stalevo.
Are you sure it's not tremor a.o.t dyskinesia? If it really is dyskinesia, I'd look for a placebo effect.
Yes, I am sure. I wake up with absolutely nothing, no tremor or anything resembling Parkinson’s. The minute I take Rytary, all hell breaks loose. I have toyed with the idea that I have been misdiagnosed. My doctor dismissed the idea although I keep asking him 😇
If you take nothing how long does it take for your PD symptoms to show? If you’ve got no symptoms I wouldn’t take it until they start to appear.
It is unpredictable. Depends on whether I have breakfast or not. If I have food, tremor starts pretty quickly and of course I can’t take the Rytary for a couple of hours. If I take Rytary on an empty stomach, I get the instant dyskinesia.
If I do nothing and just wait, I can last for a few more hours. Unfortunately I tried it and once the tremor starts, it takes too much time to work even if I am on empty stomach.
I also have diabetes and the doctor blames it on the slow gastric emptying due to diabetes. Once you have a label in the medical system you are screwed. Damned if you do and damned if you don’t.
Tricky. Do you eat much protein for breakfast?
No I don’t. I am aware of the issues that it poses but who knows? Maybe the little bit of milk I use in my coffee does the damage. I avoid cereal for this reason and all I allow myself is a couple of wheat toast with fruit jam.
I said this to my doctor who says pretty strongly that it’s about food , not just protein. He says that the stomach valve closes for digestion and it opens back up only when after the food is digested. He told me no to eat one hour after taking Rytary and wait two hours after food to take Rytary.
All of this instructions are ok, but it becomes impossible to comply when the medication reacts this way. I am guessing from the responses on this thread that maybe I am an outlier and others like you and doing better?
For the
You might have diphasic DK, which occurs when the level of levodopa is on its way up and on its way down. You might coincidentally be catching the tail end of the previous night’s Rytary.
That seems like what the doctor said. But he thinks it’s because residual levodopa in my system is supplemented with more levodopa resulting in dyskinesia.
You're likely first thing in the morning to have leftover exogenous levodopa from your previous day's pills (levodopa/carbidopa half-life about 90 minutes) and endogenous dopamine accrued while you were sleeping. The difficulty of adopting this as the cause is that you mention that the problems start the minute that you take the dose. I would experiment. For instance, take the first dose 10 minutes later. Does this delay both the start and the finish of the dyskinesia, neither the start nor the finish, ... ?
You might also wish to look at the drug's secondary contents for a possible allergy.
This may be worth looking up:
"Each capsule [of Rytary] contains microbeads of IR and 2 types of ER CD/LD. ... The formulation also includes tartaric acid, which appears to facilitate intestinal levodopa absorption distal to the jejunum."
cp.neurology.org/content/7/...
The tartaric acid is interesting. It speeds up the absorption of levodopa. Perhaps this is too fast for you?
• in reply tojohntPM
I am not an expert on this, but a quick go through the Rytary patent suggest that the tartaric acid slows the release, and thus, improves the availability.
Anyway, this fascinating stuff from the Rytary patent:
"The invention provides pharmaceutical formulations
comprising LD, CD, and an acid. A significant aspect of the
invention relates to the unexpected discovery of the effect of
acids, as defined herein, in enhancing the bioavailability of
LD."
"Coating of the Pharmaceutical Formulation
Another aspect of the invention relates to the method of
preparation of the enteric coating of the formulations con
taining an acid, e.g., tartaric acid. The acid causes a slow and
variable drug release rate."
"A significant aspect of the invention relates to the unex
pected discovery of the effect of carboxylic acid, in control
ling the absorption of LD such that the resulting formula
tions yield tighter, i.e. steadier, LD plasma concentrations."
"A significant aspect of the
invention relates to the unexpected discovery of the effect of
acids, as defined herein, in enhancing the bioavailability of
LD.
"Another aspect of the invention relates to the method of preparation of the enteric coating of the formulations containing an acid, e.g., tartaric acid. The acid causes a slow and variable drug release rate."
"Surprisingly, incorporation of an acid Such as tartaric acid in a controlled release formulation of CD-LD with a 6 hour release duration provides a significantly higher bioavailability of LD compared to the same formulation without tartaric acid."
"The data herein demonstrated that decreasing dissolution rate decreases the exposure of LD and CD, and addition of tartaric acid increases the C and AUC of LD and CD. IPXO66-B05-07 Formulation A"
"IPX066 Test C with the
addition of 215 mg of tartaric acid, when compared to
IPX066 Test B without the addition of tartaric acid,
increased by 50% in C, 41% in AUC, 119% in C6h, and
65% in C8h of LD, and 32% of C, and 35% in AUC of CD
Pharmacokinetics of IPXO66 Test C and IPXO66 Test A"
Anyway, I am now intrigued enough to try tartaric acid with my c/l...
johntPM• in reply to
Thanks for your reply. I'll look forward to seeing what you find. There's so many ways to improve levodopa. I think more should be done in this area.
DO you take your Rytary as soon as you wake up? I find I am good for 1.5-2 hours without any meds in the morning. I am working on consistency, as my neurologist says the body likes consistency, so my first dose is 7.30 a.m. I usually wake up around 6.00, but if earlier (or occasionally later), I take nothing until that time. Might help if you have residual still in your system from night before.
What time do you take you last dose at night? My doctor told me right before bedtime, but then I find I cannot sleep, so I take around 9.00 p.m. and go to sleep around 11.30 p.m. Might help have less levodopa in your system in the mornings if you take earlier the night before?
Rytary has an immediate release component. Have you tried Sinemet CR, or the equivalent carbidopa levodopa ER instead? These do not have an immediate release component.
I have asked my MDS. He says that it’s not reliable enough for daytime use! Go figure...
That is absurd. Find a different doctor if you can.
I can’t unless I move. I am in the best possible area with two of the best university hospitals in America. The doctors in both locations push DBS and have little patience for medication changes. Must be a coastal thing.
Pdpatient:
I too have dyskinesia with my first Rytary dose. Today was the third time I have tried it. Dyskinesia with my first dose since I tried it three weeks ago. I took C/L ER for years and it no longer works for.me. The 25/100. Immediate release every two hours is all I have found to work anymore. Had high hopes for Rytary.
My husband is limited in the amount of levodopa , in any form, that he can take because he gets a form of dyskinesia. He gets a respiratory dyskinesia where he feels very short of breath. It started within a yr of his original PD diagnosis and it didn’t take long before I would notice that it came on after he took his med. Dr agrees that while this kind of dyskinesia is unusual, it’s not unheard of. It’s the muscles in the diaphragm that are reacting rather than arms. Pulmonologist can find nothing wrong with respiratory. I wonder if there others who have this problem.
No I don’t. I am aware of the issues that it poses but who knows? Maybe the little bit of milk I use in my coffee does the damage. I avoid cereal for this reason and all I allow myself is a couple of wheat toast with fruit jam.
I said this to my doctor who says pretty strongly that it’s about food , not just protein. He says that the stomach valve closes for digestion and it opens back up only when after the food is digested. He told me no to eat one hour after taking Rytary and wait two hours after food to take Rytary.
All of this instructions are ok, but it becomes impossible to comply when the medication reacts this way. I am guessing from the responses on this thread that maybe I am an outlier and others like you and doing better?
For perspective, I am 7 years post diagnosis and 55.
Two observations
(1) ‘I also have diabetes...I allow myself (is) a couple of wheat toast with fruit jam’. Diabetes and sugary stuff is a no-no and is going to complicate any treatment. Dietary changes are a must.
There is a lot of stuff around on reversing diabetes. May I suggest Jason Fung ‘The Diabetes Code’. Catch him on YouTube first.
Also don’t miss this thread on Diabetes/Parkinson complications now developing -
healthunlocked.com/parkinso....
(2) ‘I am in the best possible area with two of the best university hospitals in America. The doctors in both locations push DBS and have little patience for medication changes’
If you are so ideally located and you are not having any success with the pharmaceutical route, then why not try the supplement route for Dopamine fulfillment and PD management.
I have had great success with my my spouse (PwP) with ’DopaBoost’ from Designs for Health along with 5HTP and NAC and B6 - a mimic of the Marty Hinz amino acid therapy. My entire PD management tools are found on Amazon.
Here is a Marty Hinz publication to give you an insight to his therapeutic approach.
researchgate.net/publicatio...
Hopefully you have the spirit for experimentation, otherwise, given your location, it looks like DBS route for PD Management 🌺👍🏾🌺
Uh-Oh😇This idiot (me) outed himself 😅 I should have kept quiet.
——just kidding
Caseyinsights, you’re absolutely correct and I take this bread/jam without my wife’s permission. She knows though. Mostly, she prepares healthy and vibrant food that is good for diabetes and unfortunately not great for Parkinson’s (at least for breakfast due to protein). I do have my diabetes under tight control.
I do follow Dr. Fung and have lost about 70 pounds using his intermittent fasting protocol.
You sound like my doctor—-he is basically saying that DBS is the only alternative. However, there is one interesting fact that I should have mentioned, but I did not. Now that you raised the diabetes question, I am thinking of the Bydureon (Exenatide) that I am taking and I am wondering if the improvement due to the Exenatide is interfering with my dosage of Rytary.
My doctor knows about this but said that he would expect to see the improvement over years not months because I have been on the Exenatide for only six months. I don’t know if I am seeing earlier improvement or not.
On DBS I am just saying that your doctors mindset will push you in that direction, if you do not take hold of your treatment. I am generally not in favor of surgical interventions unless absolutely necessary.
But I am full of admiration of the approach you took to battle your diabetes: a combination of dietary measures along with pharmaceuticals. Fantastic results if only judging by the weight loss - 70lbs. Trust the HbA1c and fasting insulin numbers are going in the right direction.
So I feel quite confident you are going to figure this issue out. As you obviously know, surgery and pharmaceuticals are not the only option 🌺
...and I neglected to give the link to Dopa Boost.
shop.designsforhealth.com/d...
And be sure to check the info provided : Supplemental Facts, Patient Education and Clinical Research ✨🏋️♀️✨
Thanks again, Caseyinsights
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