Rytary update

[rebtar]

I may be getting close to going back to regular C/L .

Rytary does give me longer ON times, which allow me to eat three times per day. I had lost 20 lbs last year, and had been able to slow the weight loss, but not stop it entirely. Now I’ve gained a couple of pounds.

BUT. I had finally stabilized my sleep fairly well, still not enough, but much better. I’m supposed to be tapering off sleep meds, and had made a tiny bit of progress. Now on Rytary, my sleep is much worse. I’m waking up between 1-3 and spend the rest of the night sedated from the sleep meds but not sleeping.

Rytary also seems to worsen my brain fog, that’s not only due to the poor sleep, as I noticed it the first day I took Rytary.

I’ve also found there’s a fine line between not enough and too much. Too much, and I go manic, speeding through doing whatever seems important at the moment, one thing after another, until I’m exhausted. Not good.

My afternoon dopamine slump is also worse on Rytary, I’m not sure why. Mid afternoon is rough. my MDS suggested adding 1/2 C/L 25/100 around 2:30, and it does help.

And taking a lower dose in the evening doesn’t seem to help with sleep. I think Rytary accumulates too much in my system.

Currently taking:

6-8am. If I need it, I take 1/2-1 C/L IR to cover until 8 am.

8am 2x145 plus 1x95 plus Rasagiline

1pm Same, plus 1/2 C/L IR, around 2:30. It does help with the slump. (MDS suggested this)

6pm 2x 145

10pm 1.5 25/100 CR

I was previously taking 1 25/100 IR, I plus 1 25/100 CR, four times per day, and the 1.5 25/100 CR at bedtime. I had about 2.5-3 hour ON each dose, but with a lot of food interference afternoon and evening.

If anyone had thoughts I would welcome them.

Please do not suggest more sleep meds. I’ve been mislead into a poly pharmacy mess and I need to reduce, not increase them. I’ve worked with a CBT-I therapist, which has been helpful.

has anyone found that a lot of exercise helps with Rytary sleep disturbance? I’ve been gradually increasing but I know it’s not enough.

[M-o-ggy]

My understanding is that we produce less dopamine at mid day and mot at midnight. There are others on here who will know more

[rebtar in reply to M-o-ggy]

I think it’s peaks at sunrise and sunset, and trough around 3pm (siesta time), but I’m not sure.

[rebtar]

We’ll, I don’t want to get ahead of things, but I slept through the night last night. I could barely get up at my regular time (which is important to keep).

I made an adjustment, full dose Rytary at 6pm (2x145 + 95) and lowered my bedtime dose to 1 25/100 CR.

Could be I’ve hit the right dose, or could be accumulation of too many nights of poor sleep, but at least for today, I’m happy! I’ll give it a few more nights and report back,

[LAJ12345]

”poly pharmacy mess” great description!

[LAJ12345]

it seems like the problems hubby was having on the slow release madopar,

He went back to instant release and added 1/2 an entacapone for the first 3 doses of the madopar for day. He takes the madopar closer together in the beginning of the day and spaced out further later in the day and just 1/2 in the evening. This is working for him.

I think the problem with the long life meds is if they are at too high dose of levodopa it does build up and cause a bit of mania later in the day.

You are taking the rytary quite a long way apart. Hubby found even though the ER madopar is supposed to be released very slowly he seemed to be burning through it fast then running out before the next dose was due. At 90 minutes after taking it he was getting a huge hit of dopamine and would become rigid to the point he was choking.

Could you try just taking the earlier ones of the day then the IR levodopa as needed for the last doses? That gives the rytary time to run off. The problem is each dose builds on the tail of the previous dose so by the end of the day you are getting bigger hits and with natural dopamine being made then too it can send you over the edge.

[rebtar in reply to LAJ12345]

originally my MDS prescribed 3x145 which made me a bit manic.

Yesterday’s dosing seemed to work well yesterday. See above. No mania, pretty smooth with the exception of the mid afternoon slump.

We’ll see how it goes over the next few days.

Entacapone is anticholinergic. I already take other ac meds, don’t want to add another.

In another post, someone, I believe it was Park Bear but not sure, said Rytary shouldn’t be taken less than five hours apart. If the person who posted that info could link or explain, I’d appreciate.

At 5 hours I do get a bit of wearing off, not too bad.

[LAJ12345 in reply to rebtar]

that’s good to hear. I hope it stabilises.

I think entacapone is working for hubby as it is a COMT inhibitor. Although hubby’s COMT apparently is one thing he has that works properly his dopamine beta hydroxylase is too fast so maybe slowing his COMT compensates for that.

I’m not sure about the anticholergenic properties of it. He is taking 3x1/2 tablets a day but was prescribed 5 whole ones. He just does best on much smaller doses of everything.

[PDGal4 in reply to rebtar]

My neurologist says Rytary should not be taken less than 4 hours apart. Mine wears off early, but I aim for 4.25 - 4.5 hours between doses. This includes 1/2 C/L between doses as needed. I take Rytary at 7:30 AM. 11:45 AM, 4.00 PM. (give or take 15-20 minutes depending on time I get up). Last dose is at 9:00 PM. I take an extra C/L 1/2 to whole dose between the 4:00 and 9:00 PM doses. We eat late and I've found Rytary works better after dinner rather than before. Do get an afternoon slump but my neurologist advises against dosing for tiredness. I meditate in late afternoon, 30 minutes before or after 4:00 PM Rytary, which helps. My biggest issue is unpredictability day-to-day of meds, Hope this helps.