Some excellent advice has.....
been given Steffi. My two cents. I think the highest dosages of Ropinirole can get in the 40 mg range, but to the uninitiated, that much ReQuip would knock you out Not many of us tolerate ReQuip well, but to some it's a joy so you have to figure it out on how you feel.
The general idea is how do you feel on your regimen? It's such a pain titrating up on this, or titrating down on that, but you've got to do it. Only YOU know how you feel. And only you can get alternate therapy, if something is messing you up. If ReQuip and you don't mix, then tell your neuro or GP or whoever is prescribing it for you. And Tena is right, a qualified Pharmacist know's dosages and side-effects much better than most doctors do, because, that's their stock and trade and justifies their high salaries. Just getting the product monograph is an excellent idea, and keep them handy, and have read the readable, significant parts at hand in case you notice a bona -fide serious side effect. This is our responsibility to us; never rely on the answers and advice given here by us PD bloggers. Collectively, we know a lot. But we are NOT doctors of medicine and would feel terrible if somebody took some contraindicated advice and got sicker. The dosing "roof" on Sinemet is 2 grams /day. Doctors don't like us getting above a gram a day, but if you need more to get the effects, than there is not much more that you can do. Chasmo gave good advice to try a COMT inhibitor; this drug has been found very useful to some of us. You are going to get "the sleepies" form just about ALL antiparkinson's. I have a script for ritalin, a stimulant. If I absolutely MUST drive, i'll make sure that I'm in shape to drive, wide awake, brite-eyed and bushy tailed. You might also replace the ReQuip with Mirapex, who know's it might just be what you need to do. You'll never know untill you try it, righto:) cs |
Hi Steffi, I believe you are in the UK? If so a good source of help with things like this is your Parkinsons nurse specialist, especially when in between neuro appointments. If you do not have a nurse specialist in your area there is also the PDS hotline, who can be very helpful, both will give you plenty of time to discuss what is happening to you. I'm on sinemet only, not usually mentioned as a 'culprit' in sleep attacks, but I do get them, often when I have forgotten a dose, or have simply done more than usual. As my normal state is v insomniac I have put them down to medication, but am not into excluding PD itself, especially as there seems to be a time period when they are more likely to happen (late afternoon).
Good luck with finding the best regimen, sounds like you need things tweaking to get them right for you. Lindy x |
Again...thank you so much for taking the trouble to reply.All of your responses have given me much to think about and I guess it`s time I became a bit more responsible in my medicating.I don`t know...sometimes I just sit down,shake my head and try to work this whole thing out.It is such a strange illness to deal with.
Like tonight for example...I`ve just been whizzing around like a whirlwind at youth evening,playing table tennis,laughing with the kids,organising events etc...and I don`t seem to have done anything different in my regime.Yesterday I could barely walk.What is THAT all about? Seems like we have to go with the flow...DO when we can and QUIT for a while when we can`t. Lindy...I used to have a Parkinsons Nurse who visited my home regularly.She was a great support but owing to a personal trauma [I think]she has ceased to visit.Shame.She looked at the WHOLE of my lifestyle which really helped. But folks..I am still smiling,still hoping,still knocking the Baileys back.lol Many thanks again. Knew you would come up with some interesting stuff. x |
Steffi
Hi Steffi,
Could it be that yesterday you took an extra dose of meds? The benefits that you wanted when you were off yesterday may have put you in a more conscientious state regarding timing of meds then or you may have had a little more sinemet than an average day and instead of benefitting then it carried over to the next day with the extra levodopa onboard giving you a better day than the one before when you experienced a longer off. Just a thought. Cheers, Lee |
Sinemet dosage
The man I'm caring for with Parkinson's in his late 80s is taking Sinemet
25/100 (4 tabs) three times a day, so 12 now! Thought 9 was the max. |
QUOTE
Strangely,I am finding also,that whereas previously,the succession of doses kept me fairly mobile throughout the day,now,even if I think I am dosing in plenty of time,I become immobile just after taking my medication.This lasts about 3/4 hour. [/QUOTE] That is what is happening to me. Started suddenly 6 months ago, EVERY time I take any or all of sinemet, Mirapex and seligeline, in any sequence or any dosage, I am thrown into a painful world of full-body tremors that prevent me from sitting in a chair because I shake and fall off the chair, and sometimes but not always in the middle of all that, my body freezes from the neck down, so I may be frozen half way onto a chair or unable to pull a blanket over myself. That goes on for half an hour or three hours. I have hardly left the house in 6 months. I can't tell if I am underdosing or overdosing, or if in the more advanced stages you simply fall off a cliff. |
Bob-
I have a similar pattern. Been a year or more. Takes 30 min in morning but 2 to 3 hours in the afternoon and an hour in evening. I am at 1800 mg sinemet and nothing else. So I may be on the high side. At times B-vitamins have helped launch. At others potassium does. Especially if peeing a lot. Anything watersoluble gets washed away. Will write more later. Quote:
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If I may continue...
Bob-
It has been about 15 minutes since I posted the above. As I wrote, I realized that it had been several days since I had taken the horse pills that pass for B-complex and multis in this house and asked my wife to assist since I was off. Ten minutes later I could feel that glorious sense of Spring Breakup on the Yukon as everything turned on. That has happened at least a dozen times over the last year. So, what if nutritional issues are a bigger part of the problem than we or our doctors suspect? How would we know if nutrient "X" was borderline in the diet of a newly dx'd 40 year old for both dietary intake and absorption? Or that 20 years of Sinemet halved the absorption and doubled the requirement while just being worn out from the battle had cut down dietary intake by half as well? We wouldn't know any of that because the tests don't even exist for most and aren't used when they do. Anything water soluble is suspect. And the more you pee the more likely there is a problem. Quote:
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Four hours and still cranking.:)
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Quote:
will try anything unless it is clearly marked poisonn real cold also makes shake worse or triggers shake and this is f***ing canadaa 11 montsh of snow and 4 weeks of bad weatheer |
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