I've been using this med for 6 months, with very positive results. I posted on this before and was surprised on the apparent low interest. Back in October 2020 I complained to my Neuro, my Sinemet was wearing off suddenly. I went from being totally functional to frozen in seconds. Also my dosage regimen was wearing off in less than 3 hours, sometimes in 2 hours. He prescribed Ongentys. I did my DD and was satisfied the benefits far outweighed the risks. I don't like additions to my meds, there are usually/always unpleasant side effects.
Ongentys is a COMT inhibitor. I'll leave the mechanisms for how it works to my learned colleagues. Ongentys allows more L-dopa into the brain by inhibiting an enzyme that likes to dine on L-dopa. I take one capsule 50 mg at bedtime on an empty stomach. I also take one capsule (137 mg) of Gocovri for dyskenesia, a side effect of Ongentys. I was on Selegiline 5 mg tablet daily. Selegiline is a MAO inhibitor. Another enzyme that loves depleting L-dopa. I can say I don't think Selegiline was ever a benefit to me. Selegiline did give me serious constipation. I've been Selegiline free for 6 months and almost constipation free.
Prior to Ongentys I took 300 mg Sinemet (50-200 mg ER) and (25-100 mg CR) every 3 hours 24 /7 or 8 X per day. I cut that back to 200 mg (1/2 tab 50-200 mg ER) and one tab 25-100 mg CR. Basically from 2400 mg to 1600. I'm usually in bed by 830 pm. Good sleep (5 hours+) is a rarity for us PWP. When the stars align and I get good sleep, I skip my 11 pm and 2 am doses!!
Very happy with my results. No more freeze ups and brain fog substantially reduced.
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You are most welcome PB. Hope you are feeling well. Take care and be safe.
Although Ongentys does not pertain to me personally at this time, I appreciate your sharing your experience bc it is great to learn about the lesser known options should the need arise. And it’s just uplifting to hear of peoples improvements! It is unfortunate though that there is not something that can help get you through the night without the need for the 11 pm and 2am dose. I hope someone will have input on that.
The thing that wakes me up, is the urge to pee. If I'm having a bad night I'll take my 11 pm dose to get comfortable. I seldom take my 2 am dose. I'm either asleep or up for the night.
Thank you for sharing that. It's great to get first hand experience of these new drugs. I just saw my neurologist last week and I came home with Gocovri, Trazodone and Nourianz. Like you I hate to try new meds. If they're helpful they always seem to have side effects that are unpleasant such as increasing my dyskinesia and just aren't worth it and then I'm happy to get back to my regular old immediate release carbidopa levodopa.So I find it encouraging that you have had the guts to try something and it has helped. I'm curious, did you take amantadine before you started the Gocovri? I've taken amantadine twice a day for years. I think I'm an old stick in the mud it's hard to change things.
Took amantadine 5-6 yrs ago. I stopped taking it about 6 months later after developing orthostatic hypotension (OH). At that time it appeared that amantadine was responsible. When I started Ongentys my Neuro suggested I go back on amantadine (Gocovri) as my dyskenesia was severe. He thought my OH was caused by insufficient hydration. He may be right. So I'm taking 1 capsule (137 mg) Gocovri nightly - normal dose is 2 capsules nightly. I'm seeing my Neuro next week. I expect he'll bump me up to 2.
Inadequate hydration can lead to feeling lightheaded, dizziness and passing out. PD meds can trigger this if you don't hydrate. Alcohol and caffeine don't help with hydration. I drink mostly watered down fruit juices 8 X 12 oz glasses per day.Good luck!
@enidah, I am loving the benefits that Nourianz brings to the table. I have been on it for a year now. Let us all know how you do on it. I hear that the number of people who are on Nourianz is only a few hundred in the USA. Nourianz makes Rytary work better.
BTW 😁, a friendly piece of advice. Next time I urge you to go to a MDS. I am not comfortable with your Neurologist prescribing 3 new medications at once!! Who does that?
You might hear the same advice from other forum members also.
"The catechol-O-methyltransferase (COMT) inhibitor entacapone enhances the pharmacokinetic and clinical response to Sinemet CR in Parkinson’s disease"
“The duration of “on” time was prolonged when entacapone was administered with both standard Sinemet™ (30 minute increase, p=0.03)and Sinemet CR™ (48 minute increase,p=0.05) in comparison with the responses when placebo was added (fig 1).”
“The duration of “on” time assessed with a tapping test was also longer when entacapone was administered with either standard Sinemet™ (48 minutes increase, p=0.01) or Sinemet CR™ (54 minutes increase, p=0.03)in comparison with the responses obtained after addition of placebo (figure 3).”
"Evidence for the Use of Levodopa–Carbidopa–Entacapone (STALEVO) to Improve Motor Fluctuations in Parkinson’s Disease"
“The addition of entacapone to each dose of levodopa–carbidopa given three to five times a day leads to a less pulsatile profile of plasma levodopa levels by avoiding deep troughs”
"Comparison of pharmacokinetic profile of levodopa throughout the day between levodopa/carbidopa/entacapone and levodopa/carbidopa when administered four
Can anyone suggest an inexpensive source of entacapone? I just converted from standard prescription to Medicare and got sticker shock for this med. Thanks in advance.
Hello, I too have been on selegiline 5 mg for a long time. I have kept it around to largely keep me from depression. When I have gotten lazy with it, I have had with drawl in the form of difficult to sleep.
Constipation is common for PWP. Since I've been off Selegiline I've noticed some improvement. I never thought I'd welcome a good dose of diarrhea, but when the constipation is that severe, the Tennessee two step is a big relief. Good luck!
Interested to know if you have any of the awful side effects I have read about in the web page for ongentys? Our daughter, PWP is considering the DBS surgery. I’m wondering if her doc knows about this drug? However, our daughter had some terrible hallucinations and episodes of delusions last summer that were really bad . Too much dopamine they said so her dosage was lowered and she is doing much better in that respect but is having leg pain and foot cramping and tremors with “on” time wearing off quicker.I’m going to send your post to her and see if she wants to ask her doc about it!
I appreciate everyone’s comments and questions about your experiences. I believe it helps those with the condition as well as the caregivers like me.
Thank you and God bless. I pray this med will continue to work well for you. 🤪❤️
54 in July Been diagnosed since 2013 but think it started before then however it’s hard to know for sure so she uses 2013 as her diagnosis date.
She doesn’t do FB but is on some Parkinson’s sites and relies on me to forward anything from this site and I was on another one called smart patients.com....
Just trying to find something that will give her a little more quality of life with this “terrible” disease. And it helps me understand more how to help her. Of course I always tell her to check with her doctor too!
I began taking Ongentys in November, 2020. At the time, I was taking Rytary 48.7 mg-195 mg capsule, extended release-4 capsules by mouth every morning, 3 capsules at noon, 3 capsules in the evening and 3 capsules at bedtime. I was also taking an amantadine HCI 100 mg. capsule once a day.
Here is my neurologist’s evaluation at the time—“continues with frequent motor fluctuations, experiencing troublesome dyskinesias as well as wearing off with freezing. At this time, we still have work to do at reducing his motor fluctuations and trouble some dyskinesia. Thankfully the amantadine has been good for him. I would like to consider adding Ongentys which is a once a day COMT inhibitor to improve his motor fluctuations."
Almost immediately after I started taking Ongentys, I had more energy and flexibility. I had been struggling with sleep—usually not getting to sleep until about 4 or 5 am. I thought it was from dyskinesia due to Rytary. Though Amantadine was prescribed to relieve the dyskinesia, it did not help my sleeping problem. Ongentys made it even worse. i would go about 48 hours without sleep, then crash for 4 hours, then repeat the process. My writing began to show signs of compulsive behavior. Spiritually and emotionally, I would experience extreme highs and lows within a 24 hour period. Delusions of grandeur, reckless behavior and refusal to listen to reason, began to disturb my wife and the deacons of our church. My general physician, who is one of our deacons, said, “I think there is something going on in you that is not normal.” I was coming to that same conclusion myself. So I I did some research and concluded I was manic, because of sleep deprivation. When I informed my neurologist, we agreed I should discontinue the Ongentys. The relief was immediate. My mind and body finally began to rest. This was in the middle of January, 2020. It took me several months to recuperate. During a video visit a few months later, my neuro said I should have decreased my dosage of Rytary, when I began taking Ongentys. Too much levadopa in the body can cause mania. I don’t remember receiving any instructions to cut back on the Rytary.
Since I stopped taking Ongentys, I have started taking 2 Gocovri (extended release amantadine) 137 mg. capsules, each night at bedtime, along with Rytary 48.7 mg-195 mg. each day, according to the following schedule: 3 capsules in the morning, 2 capsules between 12:30 and 1 p.m, 3 capsules between 3:30 and 4 p.m., 2 capsules between 7 and 7:30 p.m. and 3 capsules at bedtime. Although I didn’t mention Sinamet before, I continue to take no more than 2 25mg-100mg. tablets daily, as needed. My physical and mental condition has reverted back, to an even greater level of deterioration than it was when I started taking Ongentys. The flexibility and energy was nice, while it lasted.
So I recommend you try Ongentys, just be careful to adjust Rytary dosage, to maintain an appropriate, levadopa level. Mania is no fun! Please feel free to ask me for more details.
Hi Pastor, I m sorry to hear about your problems with ONGENTYS. I take one 50 mg capsule and one 68 mg capsule GOCOVERI at bedtime. I also take one capsule GOCOVERI at 1100 am. After more than a year, it is losing some of its punch. It stopped my freezing episodes. My dyskenesia levels were too severe. My Dr had me reduce Sinemet dose from 300 mg to 250 mg. I dose 8 times daily every three hours 24/7. That's 2400 down to 2000 mg daily. Looking to drop more. Most nights I do not dose at 11 pm or 2 am,I'm sleeping. That's another 500 mg reduction. Dyskenesia almost gone! I stopped taking Selegiline when I started ONGENTYS.GOCOVERI is extended release Amantadine. Pastor I'm curious, what is the Sinemet equivalent to the Rytary amount you are taking?
Take care, be safe. Merry Christmas Pastor to you and your family.
Thank you for the encouragement! I hope you had a blessed Christmas. I have never done the calculation to see the sinamet equivalent. 13 times 48.7 mg-135 mg.? Anyone good at math?
Are you seeing a MDS? Your Rytary doses seem awfully close together to me. My neuro advised me to not take less than 4 hours apart, better 4.5 hours to 5. Because of its time release, if you take closer than 4 hours, doses stack and you can become overmedicated.
You don't give a time for your morning dose, but your schedule of "2 capsules between 12:30 and 1 p.m, 3 capsules between 3:30 and 4 p.m., 2 capsules between 7 and 7:30 p.m. and 3 capsules at bedtime" seems more like 3 hours apart and have you taking 5 times a day.
Those are very good questions and observations. I am seeing a neurologist. I have a real problem with off periods. The Ongentys really helped with that, but...I think my sleep problems have been due to stacking. I usually need some type of booster to get me through Rock Steady boxing session at noon. I have been getting better sleep the last few nights. I have spread out the doses a little further. Today has been a particularly good day. I slept until about 8 a.m. I was pretty much off, but I held out an hour and took a Sinemet 25.mg./100mg. tablet at 9 a.m.. I used the little boost to shower and dress. Took 3 Rytary at 10 a.m. Took a little nap . When I got to boxing i took another Sinemet. I had better than usual energy during the session. And my energy level stayed up enough to get a lot of writing done. Waited until 2 p.m. to take 2 Rytary; .Took 3 around 4:30 p.m.. Took 2 a little after 7:30. My toes are just starting get that going off tingle (It's 9:53 p.m.) I plan to wait at least until at least bedtime to take the bedtime does of 3. After my first dose of Rytary this morning, i have very little off times and a lot more energy than I have had for a while. It maybe dosing or just one of those good days that we are blessed with some days. Than you for your advice.
I misinterpreted MDS, I read it "doctors". Did I mention I have neuromuscular disorder? I do see a movement disorder specialist. And yes I do usually wait until bedtime to take my bedtime dose, but I meant to say, wait until 10:30 p.m. to take my bedtime dose.; It's 10:3o and my trapezius muscle are beginning to tense, but I think I will hod out until 11 p.m.
I started Ongentys 3 weeks ago prescribed by a new neurologist with a great reputation. 25mg 1 dose at night to help with downtime with Sinemet 25/100 mg every 3 hrs, 1 3/4 pills. 5 doses a day. I was diagnosed with PD 4 years ago and began Sinemet at 1 pill 3 times a day. I have experienced tremendous health issues in the past 2 years including a fractured sacrum resulting in surgery , gall bladder surgery resulting in the discovery of gall bladder cancer, which was treated with surgery and radiation and worse of all, chemo. I have been cancer-free for over a year. Initially, the Sinemet allowed me to live a near normal life, but the chemo affected it greatly. My original Neurologist prescribed Mirapex, .75 mg to help the Sinemet. It took a long time to reach that level due to headaches. After the chemo, the Sinemet was inconsistent, sometimes 3 doses in a row would not kick in leaving me unable to walk or struggling to walk. The MD prescribed Amatadine which felt like somebody else was possessing my body and I had terrible hallucinations. I took it for 1 week only; next I was included in a study for Gocovri and while it did help with off episodes the side effects were terrible hallucinations resulting in my hospitalization, dry mouth, constipation, tremors, and my accusing my 87 year old mother of abuse, which was not true. And Rytary was the last prescription before my md referred me to the new doc. Rytary actually improved my dosing to every 4 hrs a day and was consistent, but the dry mouth was so bad I could hardly talk at times and then the nausea began and even with nausea meds I had from my chemo, I was sick and throwing up all day. I had to stop the med, so for the last for the last 6 months, the only medication was taking was the Sinemet which only lasted 2-3 hrs and was inconsistent, but I had no side effects and when it wore off overnight, I could use my rollator to get around and could sometimes walk by myself. So back to Ongentys. I have taken it for 3 weeks. First side was the worst dry mouth ever. I am sipping water constantly. I have a long history of constipation but this time I went 2 weeks without a bowel movement. Finally had 1 yesterday. Also, my urine output was significantly reduced. I upped my water consumption tremendously which has helped. I was taking it at bedtime as prescribed. I went from sleeping the best of my adult life to not sleeping much at all cause I was too stimulated and my body twitches and tingles and doesn't feel normal and when I take it initially, my head feels like it might explode which might be from stress. The md's nurse has been giving me suggestions to improve it. She tells me most of their patients take it in the morning and are doing well, so crazy as I sound, I am going to give it a try for a while longer: taking it in the morning and further decreasing my dose amount and # of times I take it if it works out, because it has allowed me to only have to take it every 4 hrs most of this time with little or no downtime between doses which is a huge improvement and would allow me a more normal life. Other things she suggested were taking it every other day because my dyskinesia is worse as the day goes on. I obviously am sensitive to medications, as my md says, but I am very scared of this medicine so I am very sympathetic with the minister and will only continue if the side effects can be controlled or eliminated. Best of luck to anyone in this situation.
Ewoki, you are an amazing person to have faced and overcome, all of your medical issues. You have my respect and admiration. My comments are meant to be helpful as you sort out your medication and dosing schedule issues. They are based on my own experience. I'm not a Dr. Only your Dr can give you advice. He knows your condition better than anyone.
I'm going to answer in little bites as my dyskenesia keeps acting up.
Most, make that all, of the meds I take have unpleasant side effects. - head ache, constipation, dehydration, upset stomach,, the list goes on and on. I was on mirapex also. It caused serious compulsive gambling issues. I was on Amantadine about 6 yrs ago and I developed orthostatic hypotension (OH). Your Dr doesn't know how you are going to react to different meds. That's why it takes so long to find what works for you. I had a rough time when I first started. Drs don't want to start their patients off on levodopa as their first symptomatic medication. They delay levodopa because it's only is effective for so long. And it may be responsible for troublesome dyskenesia in advanced PD. ONGENTYS was developed for PWP who were having sudden wearing off of levo dopa. As your Parkinson's progresses you will need more levodopa to control your symptoms. The advantage of Ongentys is its a COMT inhibitor - it helps more levodopa to get to the brain. You can actually take less Sinemet - I did! Ongentys has its side effects too. It stopped my freezing of gait (fog) immediately. The downside, it can increase dyskenesia. My Neuro told me GOCOVERI would take care of that. He was right. After 2 years both are losing their pop. I'll continue them till something better comes around. My Dr is also suggesting Rytary. I am very leary of trying new meds because often times what works well for others doesn't work well for everyone. M
I've been on Ongentys along with Rytary for 6 months. Definite improvement 4 to 5 hours of on time depending what, when and how much food you consume. It's a expense combo but worth it for me.
Hi Smittybear. I am 70 yrs young and was diagnosed at 59. I'm in my 11 year. I take 200 mg of Sinemet every 3 hours 24/7. This is down from 300mg every 3 hours prior to starting ONGENTYS. I can say without reservation, ONGENTYS has been very beneficial for me. I hope everyone who uses this gets the same reults. Good luck!
Hi Smittybear7. Yes seems like all of our meds cause unpleasant side effects. I don't know if Ongentys or Gocovri cause sleep issues. Sleep issues for PWP is common. I probably average 3-4 hours sleep per night. Sometimes i might fall into a rhythm and get 5 hrs. 6+ hours is rare. Good luck.
ONGENTYS, according to the dosing instructions, should be taken on an empty stomach. To me that's one hour after I eat dinner or after I have a snack in the evening. That's not a problem for me. I probably give it closer to two hours. My Neuro told me my GOCOVERI night time dose can be taken at the same time. Bioavailability is much longer than CL, hence only taken once daily. ONGENTYS is a COMT inhibitor, this allows more L-dopa to reach the brain. Therefore you'll need less L-dopa. Read up and talk to your Dr. ONGENTYS did cause me more dyskenesia, that's where the GOCOVERI comes in.
There's many medications in your Dr tool box. Most have unpleasant side effects. Perform your DUE DILIGENCE.
COMPT inhibitors are obviously more for Parkys that have been diagnosed a long time and who take a big handful of LC each day. They are one of those things that if you dont very very much need it you dont take it. The benifets are very welcome but in this case nothin comes for free. Start with very small doses so your body can adjust, read the side effects and prepare . Notice that on the box most side effects are not listed as rare.
Some things do not show up for months even years but by then there is not much chance of going back and reducing them. Stopping CMPT Inhib suddenly is very dangerous. That said I need them, and I use them and suffer the penalty. Others have no problems with them.
Hi Isthistheone,Thank you for sharing! I have also a significant wearing off problem. But it feels like Ongentys didn't change anything. No effect :(. I even take it now in the morning before breakfast as reading the pharmacokinetic study, it felt like the stomach needs to be really empty. I wish I found why it doesn't work for me.
Hi 2013. Sru to hear Ongentys is not working. I take it usually 11pm or later. Im up several times to pee so my stomach is really empty. I started in Oct 2020. Relief within 5 days! It's not working ad well now. I see my neuro next month. Hope to have some answers then. Take care and keep moving.
Hi there! I hope you are doing well. I'm sorry to hear that Ongentys isn't working as well as it did when you first took them. How are you feeling now? Are you still taking them? My friend is now on Ongentys (for the first time) and would like to hear more about your experience with it. Thank you!
Its still working at 80-90 %. I'm in my 12th year, my Neuro says 17 years. Meds lose their punch after awhile. I still take Ongentys, it keeps me from suddenly shutting down. I dose every 3 hours. It allowed me to cut back on Sinemet 300 mg to 200 mg. 200mg ea dose is not enough. Ongentys increases my dyskenesia so i take Gocovri (amantadine) to lessen that. Hope that helps.
I am sorry it has taken me so long to respond. I have been having difficulties with the ongenesis. I have had lots of problems. Thank you for your information and sharing the things you have been through it was very helpful for me and I really appreciate it. I too am having difficulties with my discussion tonight so I'm having to use the microphone to this. This evening I had. An episode of a very low blood pressure for the first time which really scared me. My new mds set up a video on Tuesday so they can discuss what is going to be done whether they will try to continue drug or stop they are looking at adding the gocovri at a lower dose. I hope you are doing well. I am not feeling well so I'm going to have to stop for now thank you for sharing. Ewoki
ewoki your battle with Parkinson's and all your other medical issues, IMO (in my opinion) makes you the strongest warrior on this site. I know you are not feeling well. You are so much stronger than you think!! YOU ARE AN INSPIRATION TO ALL OF US!! I know this doesn't relieve your physical pain, but we take our wins against this undefeated monster whenever we can.
I too developed OH (orthostatic hypotension) after being on amantadine. Talk to your Dr on this if you haven't already. This worked for me. I wasn't drinking enough fluids, coffee and beer DOESN'T count. PD meds dry us out. The older we get the less our fluid intake becomes.
My dyskenesia is acting up. Im losing content. This fragments my response. Plus my mind/memory is shot.
Insufficient hydration causes dizzyness and contributes to OH. So drink up. My Neuro said to lightly salt my food . when you sit blood pools in ypur legs and butt. When you stand it doesn't flow immediately to the head like it used to. Another PD negative malady. Syand up and give it 3,4 minutes or more. For me a year later I'm much better.
Ewoki everyone has a different response to medications. Believe me, when they find out what works you will be a different person. You've taken as much or more than 10 people. I said before you are much stronger than you realize. You keep proving it. Ask you Dr if the Oral Dissolving Tablet (ODT) is still available. When i started on CL 25-100 I would throw up often. My 4th Neuro got me on it. Never had a problem after that.
thanks for the info, your medication dosage and on time before Ongentys sounds like my current situation. Thanks for the heads up will definetly look into getting this medicaton.
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