My mother 57 years old is on C/L Controlled Release tablet (Syndopa 125mg CR) thrice a day with the dosage split as 1/2-1/4-1/4-1/2 , (i.e 62.5mg-31.25mg-31.35mg-62.5mg). Her afternoon dose is split as 1/2 again and hence the 1/4th -1/4th. She also takes Ropinirole 1mg and MAO-B Inhibitor of 50mg both in the morning and in the night after food.The biggest problem that is bothering more than the Off period is "drug induced dsytonia", especially the evening 1/2 tablet of Syndopa 125mg CR is bothersome. She is in extreme pain and suffers a lot due to dsytionia. Infact she fears to take C/L tablets due to this pain. We tried 1/4 - 1.4 also in the evening, but it didn't solve the problem either. So we were wondering if we could do a immediate release 55mg of Syndopa in the morning followed by the regular Controlled Release tablets (Syndopa 125 mg CR) for the afternoon and the evening with the dosage for the afternoon and evening split as 1/4-1/4-1/2. We were wondering maybe this controls the Levadopa Carbdiopa accumulation over the day.
We aren't sure of mixing up immediate release and controlled release tablets within a day. Is this ok to do. Are there few taking their C/L mixing up immediate release and controlled releases in one day. Also . we observed that when she takes Amantadine her dystonia stops almost immediately after she takes them, but then with Ropinirole it doesn't. Is it ok to switch to Amantadine leaving out Ropinirole. I know both are dopamine agonists but I am not sure if we can do this. Our neuro is not ready to listen to the long suffering lists we say, so we thought of trying a few combination before we break it to the neuro. Looking forward for advice from here. Thanks.
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I'm surprised that such low dosages of C/L are causing a painful dystonia. I suppose it's possible since I do get some dystonia from 25/100 C /L. Is she getting any benefit from C/L?
Next, amantadine has been called a dopamine agonist, but it is not a direct dopamine receptor agonist, which is the usual meaning*. If she wants to go off of ropinirole she needs to taper slowly instead of all at once. I am no fan of dopamine agonists but if C/L is giving her such trouble why go off the ropinirole?
Yes you can mix and match immediate-release and timed release C/L. Considering that the CR version is giving her such trouble I would expect the immediate-release version would be so much the worse because the peak plasma level will be higher.
*"Amantadine, a dopamine agonist is reported to act by releasing dopamine from the dopaminergic nerve terminals" pubmed.ncbi.nlm.nih.gov/111... I'm not taking this report as gospel but I'm not going to turn this into a major research project.
Thanks for your concise reply. After some analysis we also feel that the IR won't help her much. We are planning to add Amantadine in the evening removing Rasagaline 50mg. We will leave the Ropark as such. However, we aren't sure how much of Levadopa dosage in plasma would make her feel more or less comfortable. Do you know if there is an ideal band of dopamine plasma concertation that a normal human maintains ? Thanks
For a healthy person the ideal plasma level of levodopa is zero because the brain makes its own dopamine. For a Parkinson's patient the ideal level depends upon the state of the disease and whether other medicines are being taken such as dopamine agonists. So it is an individual matter.
I asked whether it was okay to split the pills. My doctor's answer was that they're scored and yes it's okay. So maybe you had a different pill than the scored ones.
You enter your doses in a spread sheet and the app draws graphs of levodopa levels through the whole day.
On the question of whether you can mix up IR C/L and CR C/L my understanding is that you can. But, you have to be careful. Because CR pills spend longer in the stomach they lose some of their bioavailability: 100 mg CR C/L is worth about 70 IR C/L. So, a direct substitution is wrong. In other cases such as straight levodopa and carbidopa, and C/L and C/L/E (Stalevo) the extension will impact on the straight version taken at a similar time.
Example graph showing 5 x 75 mg Stalevo; 8 mg Stalevo; 1 mg rasagiline per day.
Loading of the app is done for you. All you need to do is input the data and press Calculate. For security reasons you cannot save the data between sessions.
This is brilliant. The spread sheet is really useful to look into as whats happening. Whats more interesting is that, more or less it corresponds to my mother's PD symptoms within a day. This will prove useful to decide the dosage. I was also wondering, if there is an ideal LED band that a PD patient should maintain for him/her to feel comfotable? Thanks
I love this idea & really appreciate the work you've put into this tool! I'm wondering how to use it to improve on time? For example, if taking 2 tabs of 25/100 CL every 3 hrs from 7 AM-7PM (so 200 levodopa at 7-10-13-16-19). There are consistent high & low spikes. Do you have a tutorial as to how to use this tool to change the dosing in order to flatten the spikes? My MDS neurologist hasn't figured out how to optimize the dosing because I don't fit "the norm" but maybe your tool can help me figure it out!
A typical strategy is to start building the regimen by using doses of IR C/L. You then add medications with low half-life e.g.
- rasagiline, this has has a stable effect on the duration that dopamine lasts in the brain, so almost a flat line on the graph. 1 mg rasagiline is worth 100 mg levodopa. Unfortunately, normally there is no additional benefit from doses of more than 1 mg.
- consider Stalevo, this is C/L plus entacapone, it has a slightly higher higher half life;
- consider an agonist, such as ropinirole, which has a much higher half life (but there are some concerns about impulsive behaviour).
When you've got the basics right play with the spreadsheet, tweaking the times of the doses to avoid meals and local maxima.
Please remember this is just a model, it gives clues as to what are the best choices, but it is not perfect. What the body tells you is the best data.
"when she takes Amantadine her dystonia stops almost immediately after she takes them"
What country are you in? Untenable pain as a medication direct effect is not acceptable, especially when a roughly equivalent alternative eliminates the pain... Without full prior justification to the patient's satisfaction. Any competent, ethical physician would know this and respond appropriately... without prodding. Are you not in a country where you can challenge this to his face? The final decisions are still up to the patient not the doctor... And the doctor cannot simply abandon you, that is referred to as discontinuity of care and in many countries that's a violation of ethics at a very very minimum and the doctor would certainly be aware of that as well.
I have one of those...his name is Ramanan, if you don't immediately accept unquestioningly he unconsciously raises his voice. My guess is he needs his wives to walk three steps behind, little boys can be like that. Do what you need to do, in time he will survive the shock.
I'm incredibly new to treating PD, so that's the experience level I'm talking from. CL split in half 25-10 pill 3xs a day was too much for me and started causing what I think may have been dystonia. I was so miserable. I couldn't even put into words what the symptoms were or what was wrong. We stopped the CL.
My doctor says that there's 30 or more medications that didn't used to be available, and is very excited about how much more can be used to treat it than before.
I've been trying out Neupro. Maybe her doctor has some ideas? We started with 1 mg because I'm so reactive to medications. It's expensive but I'm on patient assistance so it's free. I'm also on rasagiline. I need to do research on all the other medications so that I can be a little more in the driver's seat of asking my doctor about ideas.
Which reminds me, I need to go take some meds ☺️.
I'm sure this is said incredibly often, I find exercise makes a big difference in how I'm feeling and how I react to the meds.
I've had both positive and negative from the neupro. It's taking an edge off the shakes. I think it's improved my mental mood. My hands are behaving better. Most of my symptoms are tremor, and that's definitely improved.
I have a complicated history that includes prior cfs/me and lymphoma medications that I'm currently on. So my side effects may not translate to other people and when I called the pharmacist, they weren't on the list.
I've had some joint or tightness pains in random places. Some hand numbness (not actual numbness, it's drawing sensation like the CFS). The first few days I was a little it wasn't quite woozy. But that wore off pretty quickly. I'm a week away from stopping the lymphoma research meds. So in about a month I'll know what's the side effects from the Neupro versus the combination with the other meds. I've been having some cognitive trouble but I think that predates this.
It's a patch, and it's very easy to use. It's stayed on through showers and baths.
My husband couldn't take the CR madopar. They nearly choked him and made him so anxious he wanted to kill himself. It is a common theme on this site. Try and go back on the instant release at a lower dose. He is 3.5 per day of the 50/12.5 IR madopar and it is enough.
My mother is not able to tolerate pain even with the minimal dose of C/L. We tried even scraping more, this leads to mild tremor followed by increased fatigue, in other words her OFF period is more prominent.
ok, then it probably isn’t too much. Have you tried the IR instead of the CR?
Also if it’s worse at night it might be that the tails of the previous doses overlaying have pushed the peak up past the comfortable dose. The body’s natural dopamine cycle peaks at midnight too so she might be making enough of her own that when added on top of all the tails from previous doses it reaches a level that is too high.
The body’s natural low is at midday, so have you tried taking the higher dose early in the day and dropping the dose before bed.
The natural dopamine level peaks at midnight. This is something I've tried to find out from doctors. This is information I can use to try and understand some of the patterns that I'm seeing including with my sleep. And the natural low is midday. Well thank you for that information!
this is from an article on schizophrenia but shows the normal dopamine too. See the effect of too much is psychosis and my guess it is the tails of all the medication overlaying with the natural peak that causes the nighttime symptoms. Although I don’t have an article to validate my theory.
I take half Sinemet CR 125mg @11pm (Bedtime )with my RequipXL (Ropinirole) 14mg…
This Sinemet CR was introduced to me by my nurse because I was struggling to turn in bed when ‘off’…
I’ve been told many times by my nurse not to mix Sinemet doses throughout the day with Sinemet CR…
Amantadine is an anti viral dual purpose drug that helps with dyskinesia and not dystonia to my knowledge…
Dystonia usually happens when your levodopa levels are too low which becomes increasingly likely the further on you get through the day…
You might want to discuss with your PD Professional the possibility of bridging your Mums levodopa with a levodopa fast release like Madopar dispersible…
This is obviously only a suggestion and based on my experience of chronic dystonia over the years but good luck!!
Thanks for the details. My mum's neuro diagnosed it as "drug induced dystonia" and shifted to CR thinking it would solve the issue. We were a different neuro where my mum was advised to take Amantadine both morning and in the night. What we observed is that, immediately after she takes Amantadine, the drug induced dystonia stops. We were wondering to remove Rasagaline in the night and add Amantadine once to see as how she responds. Hopefully better.
I’m new to this group, I’m 62, was in Thyroid / Hashimoto for many years, put in 💯 remission!, and just recently got possible Dystonia diagnosis due to struggling with unusual from me symptoms in the past few years, body AIC left shift, as well as foot (bonion) internal left rotation (literally became cross legged (sever leg spasticity) which I initially thought was due to sport Adductor injury, it’s contraction causing this shift, my left side literally glued to the right, with the pelvic floor shifted to the right side! And the physical therapy, different crazy stretchers, I was going to caused pelvic ligaments damage, as well as just found out I have L4;L5;S1 osteoarthritis, L5;S1 hernia, both connected to Obturator intenus in pelvic floor, ligaments in which got strained, due to physical therapy, lots of wrong stretches, that’s when sever contractions started! Legs got uncrossed, since contracted previously obturator internus got ripped apart, caused it’s sever syndrome thereafter, sever spasms throughout entire pelvic floor! Spasticity lately became systemic, mostly affecting entire left side from the toe to the neck, now, seams like my entire left muscular system wanting to wrap around the right side, not sure if I’m being clear with the symptoms, but I need the input if those may relate to Dystonia, my new Neurologist suspects I do, prescribed CARBIDOPA-LEVODOPA 24-100 to try out, scheduled MRI next Wednesday to have more clear picture!
a week ago I decided to go holistically, Macuna with green tea, matcha, supposed to 1 a day, was taking about 4 when spams was returning seams was somewhat helping ! Most importantly, after a not being able to walk / gate for the past three month, finally was able to find the neutral (although was in bed for 4 weeks due to sever muscles contractions pulling skeletal in all different ways) stand and then to make a few steps, the walk form the wheelchair short distances around my appartment, where I’ve got stock for the past three month after pelvic floor injuries…
Yesterday I decided to try C/D first for the first time, took Macuna in the morning, and then 2 C/L thereafter, spams didn’t go away completely, when they returned later in there evening, took Valium, which helped immediately! That’s what I was taking to help with the spams, helps immediately all the time ! First night slept with much less contractions, was able to find the neutral while standing, and walk finally, the gate !
Would appreciate anyone input, can anyone identify my symptoms, if they are related to Dystonia, or I should keep searching in a different directions, all my above injuries related? Not sure what caused the shift of my left side to begin with, either the physical injury, or neurological problem to begin with ?
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