Suggestions For Reducing 'Off' Time

[tandolino]

I sent this message to my Neurologist from Mayo Clinic who works under Eric Ahlskog who wrote “The New Parkinson’s Disease Treatment Book”. I am looking for any suggestions regarding how I can reduce my ‘off’ times that are becoming more and more severe. I’m trying to hold off on the DBS surgery and hoping the gloves from Stanford will become available soon.

"Update: the switch from Rytary 4 doses within a 24 hour period to 1 Rytary dose at night and 6 C/L doses during the day. The change was made because the day doses were less effective. Since the change, the last few weeks, the C/L 'off' times are more frequent , come on faster, in minutes with little warning. I become immobile, can't move my arms/legs & become panicked/anxious. I'm experiencing 'off ' times even with the early doses at 9am & 12pm where I had much more success previously. I drink coffee with C/L doses at 6am, 9am, and noon to see if caffeine will help me remain in ‘on’ state. I've noticed that I need more lighting on in the early evening to feel better & try to get in an 'on" state. Even when I have a good nights sleep, I’m susceptible of going into an ‘off’ state at any point of the day and feel more tired than if I hadn’t had a good night sleep in the past. Previously, when I had a good night sleep, I would have a good day with little to no ‘off’ time but that isn’t the case the last few weeks.

Earlier this week, I was panicked because I couldn’t move and I wasn’t used to that. My legs and arms were very heavy and I felt like I wasn’t going to survive. I ended up going to the ER via ambulance. When I arrived at 10pm, I took dose of Rytary & was awake/unable to move or roll over to my side until after 4am when C/L started working. Once I was able to get over and move to my side at 4am, I slept well for 4 hours.

I'm trying to figure out what I should I do to increase my 'on' time & why are my off times so severe? I take 2.5/ cl at 6am, 2/cl at 9am, 2.5/cl at 12pm, 2cl at 3pm, 2.5cl at 6 PM & at 9pm I take 3 Rytary."

[Nitro53]

I’ve found using Entacapone with my c/l extends my on time greatly

[park_bear in reply to Nitro53]

Helps me also.

[tandolino in reply to park_bear]

Thank you I appreciate this feedback

[JANVAN in reply to park_bear]

so, than you take Stalevo (or not available in Europe) ?

[park_bear in reply to JANVAN]

I take Entacapone with my c/l, but yes amounts to same thing.

[Daisies22 in reply to park_bear]

Hi park_bear,I just was wondering if Entacapone would work with Benzarazide/levodopa (Madopar) or it has to be specifically C/L.

D.

Thanks

[park_bear in reply to Daisies22]

Yes it will work with either. Helps prevent the levadopa from being metabolized before it crosses the BBB:

"is a specific inhibitor of cathechol-O-methyltransferase (COMT) which is a major enzyme in the pathway of levodopa metabolism. As a result, entacapone slows the metabolism of levodopa, causing an increase in its bioavailability and duration of action."

[Smittybear7 in reply to Nitro53]

How do you take it,are there any side effects, can you still drive? Thanks

[Nitro53 in reply to Smittybear7]

I take it with my c/l which is 5X a day. I haven’t had any problems with it. I can drive.

[Smittybear7 in reply to Nitro53]

Thanks

[ParlePark in reply to Nitro53]

Entacapone also extended my on time, however it brings on dyskinesia. I stopped it.

[tandolino in reply to Nitro53]

Thank you I will check into this

[jeffreyn]

"the switch from Rytary 4 doses within a 24 hour period to 1 Rytary dose at night and 6 C/L doses during the day."

"I take 2.5/ cl at 6am, 2/cl at 9am, 2.5/cl at 12pm, 2cl at 3pm, 2.5cl at 6 PM & at 9pm I take 3 Rytary."

So you actually went to 11.5 C/L doses per day, not 6 C/L doses per day. Or have I mis-calculated?

[tandolino in reply to jeffreyn]

you are correct, prior to trying the Rytary I was at 11 or012 doses

[jeffreyn in reply to tandolino]

Actually, I was getting confused between "doses" and "tablets". If you are using a 25/100 C/L tablet, then 11.5 tablets per day would amount to 1150 mg levodopa per day. Quite high, but not extraordinary.

[jeffreyn in reply to jeffreyn]

How much levodopa are you getting from your 3 Rytary at 9pm?

[tandolino in reply to jeffreyn]

I am Taking three capsules around 9PM, that are245mg each, so 735 mg. So 1885 mg/ day. And there it is if everything worked perfectly but usually a dose fails to kick in so I take a few more.

[jeffreyn in reply to tandolino]

I know nothing about Rytary, but perhaps someone else can comment. It just seems to be a large amount to be taking at that time (9pm).

[marcet]

Entacapone is also a great help for me

[tandolino in reply to marcet]

Thank you i'm gonna ask my doctor about that

[Notnats]

Take a look at parkinsonsmeasurement.org. You enter your dosages of all of your PD meds . Then it will give you a graph of how much of your medication is effecting in you plasm. You can look at the graph and compare it to how you feel. Compared to the timing and dosage of your meds, effective levels in your plasm and how you feel at that time, you will soon see how each dose is affecting you. The goal is to find the effective dose and keep it at a level dose there.

My husband has PD. He finds that for him on the way up to an over-shoot peak he is ok, but when the depletion of that level of meds happens, he first gets tired. Then, if that level decreases further off symptoms start to occur. The higher the peak and the deeper the trough in the graph means more severe off symptoms. He takes 50mg immediate release, 100mg sustained action CD/LD and l mg resageline at 6:30am and then he takes 5 more sustained actions spaced evenly throughout the day every 2 to 2.5 hours. He has had a tremor and it has been resolved all day for the first time since he as acquired it 5 years ago. He has been on this for two months and no sign of off symptoms. He has become alert and engaged throughout the day. You have to find your own levels of medication because all PD is individuals.

[healthabc in reply to Notnats]

Notnats, what do you mean by 'sustained action cd/ld". What medication are you referring to? (Rytary, sinemet cr...?)

Also important - the graph at parkinsonsmeasurement, while very helpful, does not account for the loss of medication effectiveness when we eat-

[Notnats in reply to healthabc]

The graph is not perfect. It does not account for constipation as well, however you can look at the graph ad see how much meds should be in your plasma and potentially see how much much your food intake and constipation is drawing down the effectiveness of your meds.

[tandolino in reply to Notnats]

Thank you I'm gonna look into that I really appreciate

[Shorebirdsotherhalf]

I had a similar experience and was taking 3 Rytary every 4 -5 hours and added one C/L about halfway through that 4-5 hour period and Imbrija (inhaler) two capsules in the blister pack during severe off periods which seemed intermittent based on stressful situations (mentally and physically). The Imbrija is a wonderful “rescue” drug and works beautifully for me. I am a patient of Dr Mischley (Seattle Integrative Medicine) and am about 3 weeks in to taking CDP Choline (1000mg/day). I know there are folks on this forum who have strong opinions regarding the latter but one particular study Dr Mischley referenced indicated many patients reduced their C/L by 30-35% due to the synergistic effects of the CDP Choline. Dr Mischley subscribes to the theory of learning what your individual threshold is for PD meds and then dial it back from there because once you hit the off periods, it’s much more difficult to recover from the deficit vs recovering from being slightly over medicated. I agree. She made the perfect analogy yesterday during her “on line” PD School seminar by comparing it to paying high interest on a loan before impacting the principal. Btw, it takes about 30 days before noticeable differences of the CDP Choline so I haven’t seen any changes just yet. Wish you the best. Z

[JayPwP in reply to Shorebirdsotherhalf]

I request you to share the two posts, mine and park_bear 's with Dr. Mischley and ask her views, which you can then post back here.

[park_bear in reply to JayPwP]

I'm not opposed to this, although I do not expect she would welcome this information. I will add that I do plan on making an additional post when I have completed my misadventure with citicoline and sharing it with Dr Mischley. Since I am not a patient I will not necessarily get a response. Anyone can communicate with her office via her contact page here: educationismedicine.com/

[Shorebirdsotherhalf in reply to park_bear]

My experience with Dr Mischley is she is receptive to information that challenges her position and seems naturally curious. She frequently makes reference to studies with varied outcomes that are inconsistent with her own experience but often with varied study criteria which she points out. She uses an objective PD scoring criteria and tries to better compare her data to datasets with others with PD as well as the general population, which I find helpful. Once you complete your experience with citicoline and can document it with succinct questions, I am happy to share it with her and her team and post what I hear back. While Dr Mischley is naturally inquisitive, she is also very thorough and likely will ask more questions than I have answers but I’ll do my best to present whatever you are comfortable with sharing. Feel free to message me here on HU and I’m happy to provide my personal email if you prefer to communicate directly. May be best to have this discussion outside this forum and post a summary of the outcome to avoid rabbit holes while keeping it focused and preserving your information. Z

[park_bear in reply to Shorebirdsotherhalf]

That is great! It will be a while but I've made a note of this and will get in touch when I have a complete report. Thanks!

[tandolino in reply to Shorebirdsotherhalf]

Thank you for the information. Do you happen to live in proximity toDr Mischley Practice? what does she do video visits? I would like to find a new neurologist. My neurologist He says that Imbrija (inhaler) is a waste of money , just have c/l dissolved into water And drink it You should be as effective when as fast as the inhaler. I don't believe her but I don't know?

[Shorebirdsotherhalf in reply to tandolino]

Dr Mischley is not a neurologist. She is Seattle based but does do appointments by zoom if you cannot be there in person (I’ve done both). I attended her PD school in Seattle and I also am enrolled in her “on line” PD school which is inexpensive (done via zoom once a month). educationismedicine.com/

My neurologist is UNC Movement Disorder Clinic in Chapel Hill, NC. I strongly encourage you to get a different neurologist if he thinks Imbrija is a waste of money. Sounds like he wasted money on medical school. Given PD is such a snowflake disease with so much variability, I have approached my treatment with an open mind and want my healthcare providers to do the same. I live on a tiny island off the coast in NC and am fortunate to have a wife who spent 30 years as a clinical research scientist (neuroscience) and through her, have established a team of providers including a primary care physician who works closely with my neurologist in spite of their UNC/Duke rivalry 😉 (go Heels) and both recognize and appreciate the inclusion of naturopathic medicine. The fact Dr Mischley also has a PhD lends even more credibility to the equation and being able to provide empirical data to support an approach to better managing my PD provides additional comfort. Best of luck.

[tandolino in reply to Shorebirdsotherhalf]

thanks for this information. I will certainly get in tough with Dr. Mischley and find a new Neurologist

[Ashti in reply to Shorebirdsotherhalf]

Hi Shorebirdsotherhalf, thank you for your input. Now that you have been on cdp choline for a few more weeks, have you noticed it affected your C/L needs? If so what signs were they that C/L was too high? Thank you.

[Shorebirdsotherhalf in reply to Ashti]

Sorry for the delayed response. We had a wedding (son) at our home this weekend and we’ve been quite busy. I started scaling back the C/L ~ 20% and actually feeling better. I was feeling jittery, cold sweats , anxious and a bit nauseous [made worse by not eating]. It wasn’t constant but more prominent about an hour after morning and mid day doses.

[Ashti in reply to Shorebirdsotherhalf]

Congratulations on your son’s wedding! Thank you for the list of symptoms that cutting back on C/L helped with. I’m glad you are feeling better.

[qazwsx11]

How is your digestion?

According to: ncbi.nlm.nih.gov/pmc/articl...

To reduce the influences of the two main reasons for resistance to levodopa in Parkinson’s disease—impaired bowel motility leading to secondary bacterial overgrowth and the systemic induction of the enzyme aromatic L-amino acid decarboxylase (AADC)—several strategies can be employed:

1. **Treating Small Intestinal Bacterial Overgrowth (SIBO)**, which is often a consequence of impaired bowel motility:

- **Antibiotics** such as rifaximin can be used to eradicate SIBO, thereby improving the absorption and effectiveness of levodopa by reducing bacterial interference.

- **Probiotics** may help balance gut microbiota and reduce the prevalence of bacteria that can interfere with levodopa conversion, addressing the issue from a different angle.

2. **Enhancing Gastrointestinal Motility** to mitigate the effects of impaired bowel motility:

- **Gastrointestinal Motility Medications** can ensure that levodopa is moved more efficiently through the gut, reducing the time for bacterial interference and improving drug absorption.

3. **Dietary Adjustments** to support better levodopa absorption and potentially reduce bacterial overgrowth:

- **Low-Protein Diet at Specific Times** can help, as dietary proteins can compete with levodopa for absorption in the small intestine. Adjusting the timing of protein intake can improve levodopa availability.

- **Increasing Fiber Intake** might aid with constipation and improve gut motility, potentially reducing the risk of SIBO.

4. **Physical Activity and Exercise**:

- Engaging in regular physical activity can improve overall gastrointestinal motility, which may help mitigate some of the effects of PD on the gut, addressing the issue of impaired bowel motility.

[tandolino in reply to qazwsx11]

Thanks for your reply. I have chronic constipation. I exercise and I'm very active, And eat a lot of fiber . I have a bowel movement every other day but it's not complete . Is there a specific test that I could request to see if I have this problem this very well could be it? thanks again please let me know if If there is a specific test i can have done?

[Dcracket825]

Are you taking any thing like Xadago or Noirianz? Talk to your doctor about them. Are you exercising?

[pdpatient]

 tandolino . Rytary is a great medication for only a tiny cross section of the Parkinson's population and anecdotal evidence suggests that it is not effective and predictable for the majority of us. It was highly erratic and unpredictable for me and I had to stop it and switch back to Sinemet after 4 years on it. If you are interested in a nighttime extended release dose, I would rather go for Sinemet CR (controlled release) That's also unpredictable, but largely reliable and cheaper than Rytary.

A great way to get the OFF periods under control would be the drug Nourianz. I have been taking it for 4 years and I am still getting good responses.

I agree with you that Rytary can cause freezing episodes and it is indeed a terrifying experience. I commiserate with you and can confirm that I had never experienced freezing episodes prior to the switch to Rytary from Sinemet.

[park_bear in reply to pdpatient]

Interesting. I did not realize its record was so poor. It did not work for me at all so I never got started. It would seem that is just as well.

[Jmellano in reply to pdpatient]

I must be one of the lucky ones in that rytary helped me tremendously. I was taking c/l 5x/ per day but akathisia would settle in about an hour before next c/l dose. Once I went to rytary, I no longer had akathisia or long down periods. Pd never ceases to amaze me as it affects everyone so differently and we all react differently to treatments

[tandolino in reply to pdpatient]

Thanks for this information, I will check with my neurologist.

[Smittybear7]

could it be too much c/l?

[Gallowglass]

I’d suggest you begin the DBS process. It takes a while to get the testing. Confront have to make a final decision yet. That’s what I’m doing. Down to 45 min ON time. The psych test people have gone a week without calling back to set appointment. The Dat scan is 2 weeks away could be Months till the surgery is scheduled !

[tandolino]

Thanks I will ask my DR, about this