Ongentys this medication WORKS! - Cure Parkinson's

Cure Parkinson's

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Ongentys this medication WORKS!

Isthistheone profile image
Isthistheone

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.

40 Replies

Thanks for a well-done report!

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.

@isthistheone, congratulations on your success with this medication. Ongentys is a once per day long acting version of Comtan.

Does your insurance cover it?

For the rest of the forum members here's the information from the MJF website :

michaeljfox.org/news/ongent...

RKM

Yes my insurance covers it with a $60 mo copay.

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.

Isthistheone profile image
Isthistheone in reply to Enidah

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.

Thank you for the update. Would you please tell me more about the insufficient hydration. Thank you

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!

Thank you

pdpatient profile image
pdpatient in reply to Enidah

@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.

RKM

Thank you, Jim. So glad something is finally working for you.

Hi Marc. Probably the biggest benefit is I don't shutdown suddenly like I did pre Ongentys.

You must have really good insurance if it covers both the Ongentys and Gocovri.

Yes it is costly. Most drug companies provide assistance. If you're not a millionaire, they may provide it gratis. Worth a look!

For those that can't afford Ongentys, Entacapone works too (my insurance covers it with a small copay)!

It can be used to improve the performance of c/l IR and CR...

jnnp.bmj.com/content/jnnp/6...

"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).”

pdfs.semanticscholar.org/21...

"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”

Another interesting reference:

link.springer.com/content/p...

"Comparison of pharmacokinetic profile of levodopa throughout the day between levodopa/carbidopa/entacapone and levodopa/carbidopa when administered four

or five times daily"

DrewE profile image
DrewE in reply to Levod

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.

kevowpd profile image
kevowpd in reply to DrewE

Maybe 'Comtan'?

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.

Interested in this as our daughter is havingoff times faster

Don't know if my fatigue is related to this or the pandemic vaccine. This started 4-5 weeks ago. No other side effects noted.

One of her big problems is the constipation. She has tried several different meds. Takes magnesium at night. Any suggestions?

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!

cclemonade profile image
cclemonade in reply to Williemom

MCT oil helps a bit

B1

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. 🤪❤️

cclemonade profile image
cclemonade in reply to Williemom

How old is your daughter? I’m 45. There are young onset groups on Facebook she might be interested in. That said, I turn to this forum to learn.

Williemom profile image
Williemom in reply to cclemonade

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....

cclemonade profile image
cclemonade in reply to Williemom

You are a wonderful Mom! Having a loving Mom who researches on her behalf; that would be a dream come true to me.

Williemom profile image
Williemom in reply to cclemonade

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!

God bless you ....❤️🙏

Oops...didn’t mean to send that crazy face...sorry I meant this...❤️🥰🙏🏻

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.

Are you on any other meds? How long have you had Parkinson's? What are your issues? Thanks and good luck.

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!

Do either cause sleeping issues? What are the side effects and how has each one helped you. Thanks very much

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.

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.

Gotta say GB this is the first med that has made a difference for me. Stay thirsty my friend!!!

GymBag profile image
GymBag in reply to Isthistheone

Makes a big difference for me also my friend

but I have an allergy to Compt inhibitors as do many people.

I take them anyway.

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