I would like to try switching my mom over from her immediate release (IR) carbidopa levadopa (C/L) to controlled release (CR) C/L during the day. She already takes CR CL at night and I notice that it seems to work much smoother for her. She still needs one or two IR C/L throughout the night until she gets up in the morning. Currently her day time dose is one and a half IR C/L every two hours about. She gets pretty bad off times and pretty bad dyskinesia. I am wondering if CR C/L will make her day more consistent and smooth.
Any recommendations or suggestions on how to switch her over to CR?
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TSonmez
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i too had bad dyskenesia and i switched to the CR C/L and it is much better now. I also take a small amount of the IR C/L because my long acting doesnt cover me good enough anymore.i think she will like the CR it is much smoother and less of a burst of C/L at once.
Thank you. I am glad you found a solution. Her dyskinesia is almost as debilitating as the off times. I am hoping this might help. I anticipate she will also need the IR at times with the CR.
Can you tell me how you went about transitioning to the CR?
I just simply switched but it was pretty early on in my disease.The IR gave me dyskenesia almost immediately so i was desperate.I went from IR 25/100 C/L 3 times a day to the same dose of CR and eventually added the IR back in as the CR didnt cover me well after the first 1 or so.I now take CR C/L 25/100 3 times a day and about 30 mins-1hr before each dose i take 1/2 IR
Time release versions have been known to be some what unreliable but improvements may have been made. My Doctor does not trust them except in small doses before bed . He still has concern that there could be a long delay followed by a big hit which could be dangerous if a large dose.
One thing to remember is that ER is only 70% absorbed so a 100mg ER is only equal to 70mg IR. I am just on ER now as IR causes too much diphasic dyskinesia for me. When I made the switch I went from 50mg IR 4x a day to 100mg ER 3x a day.
My husband's PD/Sinemet story is exactly the same as RS313, so I would have commented in exactly the same way except his dyskinesia wasn't too bad (just annoying) before taking the ER version during the day.
As lenamm has said, the ER or CR (in uk) is not a direct like for like. This will mean that if your mum swapped, just for example, 200mg ir sinemet 4 x daily for 200mg er sinemet 4 x daily she would be taking significantly less L.Dopa. This may be better or worse for her, it's very complex, symptom control, dyskinesia at start, during or after each dose? so needs the input of a PD specialist of course. The other option may be to try a comt inhibitor which allows more LDopa to reach the brain without increasing the tablet strength.
I swapped from instant release Stalevo (LDopa, Carbidopa, Entracapone) for ER Sinemet plus the new separate '1 per day!!' Opicapone and have never felt better.
I did it by Replacing one IR tablet for an ER tablet, one at a time, with a week between.
ie week 1 swap one tablet for ER,
week 2 another
and so on..... until all swapped and then add the Opicapone.
Thank you so much for your reply. My mom has dyskinesia almost the entire time, however it peaks in the middle of her dose then settles and seems to peak again as her dose is wearing off.
Oh I forgot to mention...she did try the single pill Opicapone but it increased her dyskinesia so we stopped about a year ago. She is very very sensitive to everything. Sometimes her wearing off dyskinesia is so bad it looks almost like a seizure. She can still talk but the jerking movements and head bobbing is so bad.
Ah that's the point, if it's added and causes worsening dyskinesia then it's likely working, that is, it has allowed more L-dopa to be produced from the IR tablets, In that situation, my understanding is that if the opicapone introduces or worsens dyskinesia, the existing IR tablets should then be reduced until a balance between control of dyskinesia and control of PD symptoms is achieved. Did your Dr reduce the IR CL when the opicapone was introduced and caused a worsening? As we've said the ER/CR formulation produces much less available L-Dopa, so it would be a different story with ER plus Opicapone.
How long has mum been diagnosed and taking L-Dopa?
I'm sure I've not explained the action of the comt inhibitors well but you get the gist. I'm sure I sound like an Opicapone salesman! It's just that like your mum I'm also sensitive to all psychoactive drugs and over the last 10y have had a really rough time with very little benefit. The Opicapone is the one exception and is the only drug I've been prescribed where I've gone 'wow' I can tell the difference, so I want others to be helped in the same way if possible if it suits them that is.
My mom starting taking C/L in 2013 when she was diagnosed. She progressed very rapidly and dyskinesia showed up right away.
I don't think they tried reducing the amount of C/L when they added the Opicapone. Maybe I can try that with the CR and see how she does.
It is hard to experiment with her when I only see her every other weekend for 2 days. I try to explain things to my dad and her daytime care giver but it is difficult to get compliance.
I just realized that my mom has not tried Opicapone. I was confusing it with Entacapone. I will see if her PD neuro will prescribe this for her to try. Maybe I can switch her to CR with the help of this. That would be great if it will work. I tried this weekend and the CR worked great for one of her doses. I gave her One 100mg IR then about 30 minutes later I gave her One 200 mg CR. She stayed "on" with barely any dyskinesia for 3.5 hours. That was amazing. But the next day I tried to do it for two doses and it was not working at all. I think I moved to quickly.
maybe go ahead swapping to cr/er, you shouldn't add Opicapone til the swaps done and settled anyway. I must stress this needs to be done under the guidance of a physician. Neither myself nor anyone in the group is medically qualified, We can only offer suggestions to take to a Dr based on our own experience. It needs to be done slowly and carefully with patience. It will be tough, and maybe unpleasant and will take a few months to settle. Don't keep changing the dose in response to every improvement or set back. A change even small ones take weeks to settle even then there will always fluctuations. I know it's stressful and upsetting to see your mum like this and frustrating it takes so long, I speak from bitter experience, but these are potentially dangerous drugs so I say again out of concern and empathy, a Dr/Neuro needs to ok it and give guidance ie a planned dosage schedule for the swap.
Thank you. She has her scheduled Neuro appointment in two weeks. I will ask her Neuro then. Unfortunately, I have not experienced many doctors that research or listen to any new ideas.
I will take it slow with the transition. I had no idea it would take months to settle. I hope I can get my mom to agree if the Neuro agrees.
The hardest part is that my mom is some what "addicted" to the large amount of levadopa that she gets with the IR. She panics when she is in her off time and at the thought of adjusting her dosage. But I know it is too much levadopa for her because her dyskinesia is so severe she can't walk at times.
TSonmez, remember to look after yourself too, these situations we endure can hurt not just the Pwp. Keep in touch, I check the forum for new posts most days.
Are you referring to the European sinemet long release orRytary (only available in USA). If European Long release, I would not recommned this. AT night it is fine but it is not a stable release amount and during theday cannot provide the consistency that Rytary can.
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