Recent deterioration in food interference with levodopa

[enjoy2013]

Good morning all,

I hope you are all safe and well.

I wanted to ask if like me, you have experienced during the recent lockdown some level of deterioration. In my case I have observed that the Sinemet Plus is lasting less time (up to 3 hours in the morning but otherwise, 2 hours if I had food 1 hour after taking L-dopa, even if it is a veg soup with 2 slices of bread. Furthermore, it seems I get insensitive to L-dopa for hours once I eat. For example, last week I had around 330 pm, 50 min after my L-dopa dose, spaghetti with fresh tomatoes, basil, a little of parmesan and 2 soup spoons of olive oil. I switched off at 1655, an hour after that meal, waited to take L-Dopa at 1745, and was still off at 2000.- 4 hours after that meal.

At which time I had decided to have dinner rather than taking another L-dopa dose waiting for it to work... This scenario, when it happens in the evening is dragging me late at night with hand tremor keeping me awake as long as I am off. Typically, these days if I take L-dopa around 2230 or 2300, it's not going to work without another 50 around 1am. Or waiting to take my evening dose at midnight.

So bottom line, where the rule is to wait 2 hours after a protein meal, I have to wait easily 3 to 4. It is overwhelming and I can't work in these circumstances. Not to mention socialising or plan anything.

Any insight, any idea is welcome!

[park_bear]

Consider Sinemet CR or other time-released levodopa versions which will give you longer on time.

[enjoy2013 in reply to park_bear]

Hi park_bear,

Thank you for your thought. I will talk to my neurologist. However, I'd still like to find out if there is something I can modify that I missed, it happened so quickly, it seems it happened in a month.

[Hidden]

Hi easy2013:

The lockdown has been a stressful time and I think stress reduces the effectiveness of levodopa...

When were you diagnosed? If you are like me, it could be that your Parkinson's "honeymoon" is over, and you will have to be a lot more careful about what you eat and when...

Tips to start with:

1. Start keeping a detailed food and levodopa dose log (i.e., what you eat, when you eat it, dose times, dose amounts, when you go off/on, ...).

2. Fast for a day, taking your levodopa doses as you normally would... do you have any off-times... if so, fix this first (i.e., adjust does amounts and/or dose intervals)...

3. Do you have constipation? If so, deal with it (e.g., I take Miralax regularly).

4. Do you have gastroparesis? Some useful info can be found here:

dietvsdisease.org/best-diet...

[enjoy2013 in reply to Hidden]

Hi Levod,

Thanks for the link and the tips,

I guess indeed, the stress due to the confinement must have played a role.

Strangely, I had also felt very bloated recently and it passed yesterday. Still the toast with smoked salmon left me off for 4 hours. I started to keep a detailed log a few weeks ago, but it is quite overwhelming. I am hardly available to do work or socialising.

I am one of those who take mannitol with benefits, for 2 years now. I saw it is a FODMAP. But I don't think it is the problem.

Do you know the nutritionist who wrote that post? Funny she didn't mention PD...

[Hidden in reply to enjoy2013]

>I started to keep a detailed log a few weeks ago, but it is quite overwhelming.

Indeed, it is a lot of work, requiring a lot of trial an error. In the end, I found that protein is my biggest problem, so I eat most of my daily protein after my last dose of the day (i.e., with supper).

>Do you know the nutritionist who wrote that post? Funny she didn't mention PD...

No, I don't.

[enjoy2013 in reply to Hidden]

Yeaaaaaah, Don't know why, I seem to be the one with all the challenges.... guess what... I need to be ON to fall asleep, and to stay asleep, otherwise I get a form of restless legs. I guess this is making things even more complex. Thank you anyway!

[OREOLU in reply to Hidden]

Hi Levod, when you said,maybe honeymoon is over in your posting above,did you mean that C/L is not working anymore or not working well? Also, are you experiencing this period now?And I supposed you are still using C/L. I have been using C/L for about 3 half years and I have started experiencing the same problem,so what I do is to skip lunch,avoid protein in the mornings till after my last C/L dose at night.

[Hidden in reply to OREOLU]

Hi OREOLU:

> when you said,maybe honeymoon is over in your posting above,did you mean that C/L is not working anymore or not working well?

In the second half of last year, I began experiencing a lot of unexplained off times... (e.g., what seemed like "delays in doses taking effect" and "missed doses", ...) after a lot of trial and error, i found that I could only stay on if I was very disciplined with my eating... You could say the c/l wasn't working well, but I believe it is really due to the advancement of the disease, in particular, the endogenous dopamine (from my body) was now insufficient to "hide/cover" the fluctuations in exogenous dopamine (from my medicine) caused by dietary factors (e.g., variation in protein intake and GI transit time, ...).

This made PD a lot more difficult to manage - which is why I refer to it as the "honeymoon being over"...

> Also, are you experiencing this period now?

Well, if I am disciplined with my eating, I can stay on, continuously all day (i.e., with no problems)... and I feel like I am better at it now, then I ever was... (I have the confidence I can reliably stay on)...

> And I supposed you are still using C/L.

Indeed

> I have been using C/L for about 3 half years and I have started experiencing the same problem,so what I do is to skip lunch,avoid protein in the mornings till after my last C/L dose at night.

I eat a low protein breakfast and lunch, and try to not to eat supper (i.e., my high protein meal) until 1 hour after my last dose... (we are essentially doing the same thing!)

[OREOLU in reply to Hidden]

Hi Levoid, thanks for your reply. Hope you are exercising.And are you tremor dominant or non tremor dominant?

[Hidden in reply to OREOLU]

>Hope you are exercising.

I am. I run/walk and strength train (on alternate days).

>And are you tremor dominant or non tremor dominant?

I am not exactly sure how these are defined, but I guess I am "tremor dominant" (my main PD symptoms are tremor and bradykinesia.

[17Hillview in reply to Hidden]

This has exactly been my experience. For no seeming good reason, cl became very food dependent. And it took me a while before I realized it was food related. Great post!

[justhavefun2]

I have noticed a bit of decline since the pandemic as well. My neurologist prescribed a small dose of Requip in addition to the Sinemet I am taking. (Clearly experiencing “off time”, depression and slower movement.) I asked her if the symptom progression would reverse and I could dump the extra medication when life returns to “normal” (when I can get back into the gym, stress reduction, etc.). She said, “Absolutely”! I am going to hold her to that! 😉

I hope you are able to find a way to cope and that your symptoms improve! Tough stuff for sure!

[enjoy2013 in reply to justhavefun2]

Hi justhavefun2!

Thanks for the info, definitely I will try to speak to my neurologist

[camper1]

I have the same problem regardless of how long I wait ,, once I eat either protein or have a full stomach the sinemet doesn’t work at all. I’ve lost 22 pounds because of it and the doctor wants me to see a nutritionist.

[enjoy2013 in reply to camper1]

Yes indeed. Did your doctor recommend a nutritionist with experience in PD?

[camper1 in reply to enjoy2013]

No, just a nutritionist.

[enjoy2013]

I wondered, do you guys take L-dopa every day at the same time? For example every day at 700, 1200 , etc... or do you adapt it to your schedule, meals etc...? I thought maybe some unexpected off time was due to the fact I wasn't regular from one day to the other

[Hidden in reply to enjoy2013]

Yes regular time each day. I haven’t been able to avoid morning protein. Doc says eat cereal without milk protein.