Inter-medication pain

[buckens]

As my medication wears off, I get pain from my head to my toes. This lasts for an hour or more .... when the next dose kicks in, the pain goes away. Does anyone have a remedy to ease the discomfort? I take dopamine medication every 90 minutes.

[eschneid]

If people want to maximize help from others, they should add where they're from to their profile, when dx'd and any other important info so they can be helped. It's early and I'm cranky😵‍💫

It sounds to me like you'd be a good candidate for the subcutaneous pump that is approved in Canada and the UK and gives you a tiny dose every 10 minutes. or so. This should give you good quality of life and from what I read here & there, should be coming to the US in the near future.

Produodopa is the AbbVie version and the leader of the pack.

michaeljfox.org/news/fda-re....

[HekateMoon]

I can relate to pain while meds wear off. From head to toe plus now recovering from two shoulder fracture this multiplies. In addition if i dont take a mini dose of dopamine thats one madopar as sooon as pain or tremor lightky begins i get dystonia on my left foot and toes, lately affecting my knee too...pain is a major feature to me though i take meds every 3.1/2 hrs it takes an hr to become active. I can function then for another 3 hrs or so if dose dont fail.

[rebtar]

Yup. Pain isn't too bad yet, but is enough to make me not want to do anything active. As meds wear off, I get a burning sensation on my skin, a sort of headache that feels like my head is stuffed with something too tight, my feet go numb (not totally numb but enough to make walking unpleasant), and i feel the old sciatic pain returning. my left thigh gets pretty rigid.

If I haven't slept enough (at least 6 hours or so), I get toe curling in AM until meds kick in, and sometimes in the mid-afternoon when endogenous dopamine is low.

All of this improves when the next dose kicks in. I'm also getting rapidly advancing arthritis, swollen joints in my hands, wrists and left elbow, which gets better with enough sleep, moderate exercise and when meds are working optimally.

Biggest issue is that if I take enough C/L after 4pm or so to keep symptoms at bay, then I can't sleep. So I'm symptomatic and uncomfortable most of the afternoon and evening, though not 100% OFF, it still keeps me from wanting to do much.

I'm waiting for the AbbVie pump to be FDA approved (fingers crossed it will be soon and covered by Medicare). My MDS thinks I'm a good candidate.

I could also explore DBS but I don't feel ready for that yet.

My meds:

8am 4x95 Rytary, 1mg rasagiline, I usually take 1/2 or 1 C/L 25/100 immediate release before exercising in the morning.

Breakfast around 9:30am, exercise around 11am OR exercise 10:00am, breakfast around 11am. The first option works better because by second dose at 1pm, stomach is pretty empty.

1pm: 50/200 C/L CR

2:30-3:00: 1/2 C/L IR

Lunch: 3:30pm

4:30: afternoon walk

6pm: 1 1/2 C/L CR

7pm: 1/2 25/100 C/L IR

8:30pm: dinner

10pm 1 50/200 C/L CR which has helped a LOT with sleep. I was taking 1 1/2 25/100 CR. since I started 50/200, I usually get at least 6 hrs of sleep.

I know that mixing Rytary and other forms of C/L isn't recommended, but my MDS says whatever works for me, and this is the closest I've come to controlling symptoms most of the day without it interfering with sleep. Why don't I take doses closer together? I can't figure out a schedule where I can take evening meds and not have protein interference from dinner for the rest of the evening. I eat most of my protein at dinner. I'd love if anyone has suggestions on that.

When I started Rytary, 3 doses per day, it didn't last the full 5 hours between doses, by mid afternoon I was speeding and compulsive, and it really interfered with my sleep. I've kept the morning dose because it allows me to both exercise and eat breakfast. I don't like the way it feels though, I tend too feel less sharp cognitively on Rytary.

I met someone who was in the AbbVie pump trial and she says that it was a total game changer for her. She ended up taking half the amount of meds she was on previously.

[HekateMoon]

Thanks Buckets, thats very helpful. I have very similar symptoms...