Let me be clear. I have no dog in this race, i.e. I don't know what we are going to do about her long term use or non-use of Sinemet. I am responding to my mother's reaction to increased dosage and later reduction of Sinemet. She's on lots of other meds that I have no reason to be suspicious of. In fact its the neuro who was suggesting taking her off Sinemet entirely, "to see what the effect would be", presumably so we could learn more about her condition. I lobbied to slow down this process and try some months at her current dosage. But I was concerned this may not be good if my mother "starts to recover", as the book states.
She has had general checkups. Her doctor doesn't really like to comment on these matters, and defers to the neuro. He just said that all his PD patients on these meds are sleepy all the time and have trouble maintaining their weight. Which describes my mother in the past few months.
At this point I'm not sure what the best scenario may be, which is why I was looking for help with people and practioners who have pursued reduction of Sinemet.
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Originally Posted by lindylanka
I would get a second opinion, and in the meantime let her settle at the dose she is currently on. It takes time.
Sleeping problems are quite usual with PD and with taking sinemet.
I am not a medical advisor, I cannot advise on medication, neither can anyone else, they can only tell you what their experience is.
My opinion is too much chopping and changing won't help. We have fragile brains, and every time you make a change the brain has to adjust to another set of factors, another imbalance between the fine tightrope our neurotransmitters give us so we can have something like 'normal' living.
The book does describe things that happen to all of us when we make medication changes. As patients we struggle with them, like your mom is doing. We go home with the instructions and try to make sense of what happens to us, and we share experiences, and often they are helpful and informative, and get us by till we see our doctors again.
The theory of the book is scary, and while some have claimed that it works for them, I have yet to meet anyone who has followed this protocol and got off sinemet. I am not claiming that it does not happen, but given that we come across a lot of other PwP, and people who have been re-diagnosed, it is odd not to encounter anyone in the real world who has done this.
You sound like you are determined to take her off sinemet. You have asked a lot of questions, these really need to go to an MDS, not anyone else.
I am sorry I posted now. I did so because you sound so distressed by her condition, and I gave the best advice I can.
Because you want to do this. To reduce her meds.
But I cannot validate your decision to do so.
It could be something else other than PD. No one here can tell you whether it is or it is not. You say she is not doing well, and clearly you are very concerned for her.
The only thing I can add is that if she is still having pains in her arms, and if you have not already done so, you should have her GP check her for angina.
In fact get her to have a good general checkup too if she has not had one recently, because not everything is PD-related.
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