I have just had a change of medication after 3.5 years on same dosage of 3 x Sinemet Plus (25/100) and 3 x Sinemet Half CR (25/100) per day, pretty much at about 5 hours apart.

I have had dreadful foot dystonia since feb this year and following seeing my neuro who suggested more CR in the night (didn't work, and gave me trippy dreams) I contacted my PD nurse specialist who reckoned that I was rather undermedicated and so I have been started on entacapone 200, this week I am taking 2 a day, next week it will be 3.

All this would have been fairly straightforward except that just prior to this I ran out of CR's and so while I was waiting for my new prescription to arrive (5 days) I took 1.5 Sinemet plus four times a day. This was a bit of a revelation because the apathy that has plagued me for a while simply lifted, and my thinking became much more focused. SO...I liked it and decided to stick with it, but was still undermedicated, walking was poor and dystonia still bad.

Well, I then started on entacapone which has also been a revelation, I am now walking better than I have done in 7 YEARS. Smooth movement, normal pace, for about 4 hours at a time. So I should be pleased....well yes, over the moon about feeling better both mentally and physically. And I suppose it will all go to help remove that 'possible' from my somewhat hazy PD dx.

EXCEPT that I now have really swollen ankles and feel a bit woozy and my balance is all over the place. I haven't been wildly over active, and my GP checked me out and my BP is really high (always been low before). It's not mentioned in side-effects and I am anxious as GP doesn't really have a handle on PD.

I would be grateful for any insights on med changes and entacapone in particular, especially if anyone has had blood pressure changes, slight breathlessness etc as above. I have also been experiencing the achy arms on wearing off that John mentioned in an earlier post, but that has been going on for a while. Just didn't expect this....

Lindy

Hi,
I was on stalevo which is sinemet and entacapone. I di not have any negative side effects, on the contrary I loved it. I was only on it for a while and I was in the donut hole on medicare and could not afford it so I've stayed on the generic sinemet. I'm curious as to the high BP many PD meds caution about low BP but I'm not familiar with an cautions pertaining to high BP. By the way I am 41 y/o and have had PD for 11 yrs. I have no other med. problems. What is sinemet plus? Best of luck.

Hi,

Just did some quick reading on entacapone. Here's the link

http://www.rxlist.com/cgi/generic/entac_wcp.htm

On page 4 they mention other meds that it could interact with. These other meds are pretty heavy duty heart meds for the most part. They mention BP fluctuations but didnt say higher or lower. Let us know.

----------------------------------------------------------------------------Damn the donut...how much do you think the drugs executive who had the idea of decimating monetary benefits of plan D earned in astronomical pay?

i find taking stalevo in two pills ( generic sinemet and entacapone) can cost only half brand name STALEVO. mail order sinemet about $.30 per pill and entacapone approx $l each. the entacapone might be taken one to one or with every other generic sinemet depending on results and neurologist's instructions.

i have started taking mucuna only. it is the only med for PD i have found very helpful. dosage amount and timing YOYO ( you are on your own)..
i have amantadine for tremor taking one or two daily or none.
amantadine was my sole PD med for several years. the usual max of 3
gave interesting hallucinations.

davos

Many thanks for your replies, Jim the link you gave me was very useful, and Davos Ive been watching the mucuna users for a while,v v interesting stuff. I may have got to the root of the problem with blood pressure. Its two fold I think, it may be a temporary blip adjusting to a new regime, and I think the boost with the entcapone gave me too much dopamine, Ive slightly backpedalled on sinemet, balance is not so wacky and woozyness has mostly gone.

Sinemet Plus is simply 25/100 tabs. It was good to read more about entacapone and understand exactly what it does. I have been very pleased with it, I cannot describe what a difference it has made to my mobility, I feel as though i have my life back.

Thanks again
Lindy

P.S.
(For anyone looking for info on Sinemet CR, for information only and not to replace any medical advice, I spent 3.5 years on a relatively low dose and experienced loss of motivation and general apathy. I was not aware that it was related to medication until I stopped taking CR. I do not know whether this was related to poor absorbtion and a correlating undermedication, or whether it was the CR itself. The NPF ask the doctor forum has more info on this, but you will need to trawl through the doctors replies)