Pulling the plug ☹️

[ruff1]

My husband has been diagnosed for 13 years. He takes spirocco 20mg , Xadago 10mg and stelevo 125 at 6 am. Then Stelevo 125 every 3 hours during the day . He is generally good through the the day ( golf, gym, running) but every day between 7.30-8pm he stops completely. I have to help him out of the chair to go to

bed. He has half sinemet -slow release- which he takes in the early hours to help him turn over in bed .

An anyone explain why the Stelevo work during the day but stop in the evening? He’s careful not to eat till 30-60 mins after taking his tablets .

[johntPM]

I don't know why your husband should suddenly get worse at 1930-2000. But, I think it would help if you could visualize what is going on.

Your husband is on many drugs, taking some many times per day. This makes it difficult to see what is going on. To this end, it may be worth using an app that I wrote:

parkinsonsmeasurement.org/t...

This draws a graph which shows on a minute to minute basis what are the expected levodopa equivalent levels in the blood plasma.

For each dose you must enter the drug name, the time it is taken and its size. For "spirocco" use ropinirole. "Xadago 10mg" is not covered by the program, but you can approximate this with rasagiline 1mg.

[ruff1 in reply to johntPM]

Thankyou if I could work out how to attach a screen shot to my message here I’d show you his outcomes , it doesn’t show any major dip early evening ☹️

[johntPM in reply to ruff1]

I am not a doctor, so make of this what you will.

I entered the data that you're using. (I had to make some guesses: the ropinorole is immediate release, not extended release; the time of the night-time dose; last dose of Stalevo is 1800.) I get a LEDD of 1366.

I also notice that 1930-2000 is not a low point. But, the graph is on a steeply downward move at this time. And, I note that during the day there are 5 major peaks, each slightly lower than the previous one. This is being caused by the 0600 dose of 20mg ropinirole, which as the day progresses has less and less effect. Perhaps, it would be worth, as a first step, spreading out the ropinirole across the day. You should tapper towards this with, e.g. 16mg at 0600, 4mg at 0900.

[ruff1 in reply to johntPM]

Thankyou for your response , when I put the Ropinerole in to the chart I entered the CR version. I get LEDD to 1533. I did assume that it was the spirocco that wasn’t as effective at that time , even though it is supposed to last 24 hours , I assume over time is becomes less effective. The Parkinson’s nurse did suggest a few months ago spreading the spirocco out but she suggested 16mg at 6 am then 4 at teatime . John tried this but his symptoms were dreadful throughout the day , although at that time he was on Asilect not Xadago (Xadago has had a beneficial affect , not sure Azilect was still working for him ) . Do you mean starting with 16mg at 6 , then 4 mg at 9 am then gradually moving the 9 am one till later in the day ? 😀

[johntPM in reply to ruff1]

Probably there is no one best solution to making use of your husband's existing drugs. What matters is that you can, by experiment, search through the options efficiently. You want a regimen that safeguards the quality of the early part of the day which is presently good (e.g. golf), while improving the wipeout from 1930-2000. Moving some of the ropinirole to late in the day would cause its contribution to spread into the sleeping time, which you probably don't want. I would favour small changes at the beginning of the day. Therefore, I would suggest these intermediate steps:

0600, 0900, 1200

20, 0, 0 --- now

16, 4, 0

12, 8, 0

8, 8, 4

(I am assuming that you have 4 and 8mg ropinirole pills.)

If these changes don't help, I would recommend going back to where you are now before seeing the consultant, about an increase in dose. (But your husband is already on a high daily dose, the LEDD, as it is. Is he a big person? Are there any signs of dyskinesia? )

[ruff1 in reply to johntPM]

Hi John is a tall man 6’ 2 but doesn’t weigh a lot 67kg he has lost quite a lot of weight over the last year but his exercise regimen has increased . We do have 4 and 8 mg tablets and I do like your ideas for change . Do you think a week on each change ?

[johntPM in reply to ruff1]

From the point of view of the ropinirole, its half-life is low enough that very little of it goes forward to the next day. So, if this were the only thing to take into account, one day would be long enough to determine whether things have got better or worse. However, the observed results will vary over time independent of the regimen, especially if your husband's routine, exercise, diet etc., changes from day to day. For instance, I find that constipation affects the uptake of the drugs that I take.

Before you start making changes, it would be useful to run a control test using your husband's present regimen to measure as best you can the effectiveness of the present drugs and how the results vary from day to day. As a first pass a week should be long enough for this.

You should think about the placebo effect. But that's probably a step too far to begin with.

[jeeves19 in reply to johntPM]

John. The table linked each drug to a colour but then allocated a different one on the graph so I’m unsure which is which?

[johntPM in reply to jeeves19]

jeeves, I'm sorry, but I don't get that problem. Each dose of each drug gets a different colour, and this is used in the graph. The total is shown in black. If you are still getting problems, please send me an email at the address shown in the Contact link in my website with a screen shot attached.

[janisjose]

Maybe he's taking too much... try to switch to LAVIDA 250 MG .I had them 3x a day and everything for me is in steady state