Diagnosed age 44, 46 now - what I learned about Rytary

[SanMateoPD]

Male, living in CA. A report about my symptoms and how I learned to interpret them to avoid overdosing.

When I was diagnosed I fairly soon switched to Rytary 245mgs. They would last about 5 hours and I was on 4/day which was good, along with 1 ongentys in the morning or evening. At bad times of stress, not able to sleep etc I'd take more Rytary though.

This worked well but I now realize I was often getting overdosed! But I didn't know it. The first sign was getting a really serious overdose a few times accompanied by very strong mania and uncontrollably body movements for a long time, then a really painful comedown.

What I realize now is that having too much dopamine from the medication can feel somewhat similar to my typical PD symptems (tight lower back/left side/muscle pain etc). So what I ended up doing for about the first year was to take a pill, then 2 hours later feel "it's not working" and then take more. That not working was *actually* just having too much of it in my system. Needless to say taking another one so soon made me feel really weird. Also at night my absorption/generation system is much better, so taking them at the normal rate, or whenever I felt "bad" often led me to having too much in my system.

The first indication that there was something weird was when I tested something in the mornings: rather than a full pill, I tested taking half a pill (not recommended, but I did it), since I'd often get really intense shakes around that time and if I also took ongentys I'd be at very high risk for mania/OD. Surprisingly, somehow half (or even a quarter) of the 245 would let me feel just fine for quite a long time! How could this be?

With that as a hint, I eventually figured out that I was often confusing OD symptoms with under-dose symptoms. This also went on as I got more in shape and had switched to doing much, much more exercise per day (on a good day, 2-3 hours of pretty intense running around playing pickleball). So, now I have a better solution - my doc also gave me some 195mgs (0.8x as big as the prior pills) which I lead off with if I'm doing overall well.

So, my learning for myself is: pay a LOT of attention to really characterize my symptoms. In general, getting up and going somewhere, moving, can switch an "meds aren't working and I feel bad..." state into "oh, actually I am just fine, I could do things outside and do just fine, unavoidably suffering 2/10 pain but it did NOT get worse for another 3 or even 4 more hours as I exercised, until I really clearly felt the traditional PD symptoms again". This has been a great learning and has let me be much more mentally stable.

My overall typical schedule including this learning is now:

up at 8 am,

830 0.8 rytary (total 0.8 x 245mg)

1300 1 245 (total 1.8 x 245mg now)

(eat)

~1500 on ongentys well after the meal

1530 start big exercise

1700 1 rytary (total 2.8 x 245mg now)

2200 1 rytary, depending (total 3.8 x 245mg)

overnight maybe a 0.8 depending how late I'm up

Overall, big fan of Rytary now. Do any of you all have similar symptoms or experiences? I'm sure there's more to this than I know.

[PDTom]

healthunlocked.com/cure-par...

[park_bear]

Yes, too much can be mistaken for too little. See also:

healthunlocked.com/cure-par...

[convncer]

let’s Chat off line. Convncer @gmail. Com

[peminc]

@SanMateoPD. Sorry yo read about your experience and frustrations. I have been on Rytary for years and prefer it to Sinnemet due to the longer half-life. I would still experience a bit of a cliff effect (rapid feeling of neuropathy) after 3 hours were it not for Nourianz.

I live on the East Coast about 90 minutes from my Movement Disorder specialists in NYC. They are very helpful. If you live in San Mateo, then you should be similarly close to UCSF. If you can get in there for treatment, I think you would get the attention and best care on the planet.

Also discuss DBS with them.

Finally, Rytary will soon get a new twist with a longer therapeutic life of 5 hours.

Sincerely.

[Sydney75 in reply to peminc]

Hope the new version of Rytary is less $$$.

[SanMateoPD in reply to peminc]

You mean the new ER that's supposed to come out, right? The ones I have now are rated for 5hours but I've heard those may be for even longer. Awesome

[LAJ12345]

you explain this very well. It’s what a lot of us have been saying yet neurologists don’t seem to take any notice, at least hubby’s ones don’t.

I think all drugs and supplements have a sweet spot and a u shaped curve. Too little or too much you feel worse, but get the right amount and you can feel better. But this sweet spot might even move over time to need more, or maybe less as with thiamine. So as you say noticing body reactions and trying to work out if it’s too much or too little for you is the thing to do.

[JacksMomTX]

i,too, have a hard time telling the difference between under & over medication. It's crazy-making.

So,when you say .8Rytary are you taking the 145mg or splitting a capsule? I feel like in-between doses could help, but didnt know if how to split the extended and immediate release ...how does the extended release work?

i'm trying to dovetail the medication w/ DBS. Any suggestions on how to approach this?

[SanMateoPD in reply to JacksMomTX]

My doctor prescribed me some 195mg capsules too. So each one is 0.8 as big as the 245mgs. Ideally I'd like to have a bigger variety of sizes. It's still pretty hard to tell what's going on.