How to get back from rytary hell.

[rebtar]

Ok, it does the manic then falling off a cliff thing to me.

I'm only taking it now in the morning, but afternoon CR results in stacking and sleeplessness. I've lost weight. Dont want to exercise. Just walk a bit.

Nervous system out of whack. I jump when someone speaks to me. Past five nights very little sleep.

I probably would be better on straight IR but not sure how to get there.

Really messed up. Don't have an effective care partner. Stress of moving didnt help.

I know its a lot of negativity but im feeling quite lost....

Hoping my peers can help.

10 years in...

Rebecca

[Gallowglass]

your neurologist should help. If not get a new one. I took Rytary got one month but quit because it did not help as much as CL (IR). There’s a newer drug out there that might get more dopamine to your brain. Ask about it.

[rebtar in reply to Gallowglass]

What is the name of drug?

[Sydney75 in reply to rebtar]

I believe it is IXP203. My husband's movement specialist said they will no longer be able to give Rytary samples past October of this year as it will be going generic earlier because of patent disputes. The new drug is set for release in 2025.

usf.edu/health/news/2024/ha...

My HWP is on Rytary, his neuro thought it would give him more on time and less pain. He has a complicated medical history due to long history of back problems unrelated to PD. He was on too much Rytary and we are slowly backing off a bit.

If you do not have RLS melatonin may help with sleep and add in magnesium.

I hope you can see your neuro perhaps to change up your meds a bit.

[BeedieBird]

Rytary has been a life saver for me. Getting off immediate release was crucial as the off symptoms were too severe. I take 3 145mg capsules a day and a 50mg immediate release at bedtime. anxiety and sleeplessness for me was lack of dopamine and not because of the meds. Hope you find some relief for your anxiety. Moving is so stressful. Managing stress, crucial. Thoughts be with you.

[Zella23]

it must feel very overwhelming for you, especially when you’re on your own and clearly moving added to your stress as well. It sounds like you need some medical help, either a caring Neurologist or someone who can reassess your PD drugs and advise you. We don’t have Rytary in the U.K. only straightforward C/L drugs, so I’m not much help with that.

PD is hard at the best of times, and you do need a caring friend or partner or group of people who have some understanding of the condition. Maybe there is a local support group near you. Try and make a plan of what you can do to help your situation as feeling out of control with everything is totally overpowering and overwhelming.

I think I would start by trying to see a more supportive Neurologist/ Medical Professional who can help you get your meds right, just small steps, one thing at a time, All the best to you, there are a lot of people on this website who care.

[Thal]

Went thru it last year. Got lucky with new neuro who put me on entacapone with my madopar. 3rd month now and doing better. Reduced levodopa and leveled off my periods a little. Overall good.. the meds are otherwise known as stalevo in the combined form.