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At 04:23 AM 3/7/2003 -0600, you wrote: >Niwana > >On Thursday, March 6, 2003, at 10:26 PM, NMartin wrote: > >>Don >> >>Thought I understood in reading Dr. Lieberman's site that Sinemet >>could not >>come in patch form. But if it does, I couldn't think of anything >>better for >>the moment. I'm doing the trial study with the Rotigotine Patch, >>but >>that keeps me up a couple of extra hours in the night. However it's >>better >>than Comtan or Mirapex for me. >The person who told me about the patch is under a non disclosure >agreement. >I do not know to much more about it other than just that testing is >finished. > >>Would you mind if I ask how long you've been diag and quantity of >>Sinemet >>daily. I feel my Sinemet dose is too high. It's double what it was >>before >>I went off of most drugs in preparation for the trial study. >>Currently I >>take 20-22 tab (reg 25/100). In the past the Sinemet CR made my >>dystonia Doesn't that much Sinemet cause rather serious dyskinesia? >>more painfu My neurologist, who is quite qualified, isn't worried >>about >>it much. Thanks for anything you can share. l. >I take 2-25/100 every four hours and 200 mg comtan to stretch this >amount of sinemet as it runs out in 3 hrs 15 minutes (approx). 0r >12- 25/100's and 6 comtan every 24 hrs. Diagnosed 5 years in April. >There was a CG or PWP I can't remember which who was from England, >just as I got diagnosed 5 years ago, who had calculated on his >website and had a theory on how much sinemet a person should need >through a number of factors . Maybe some of the longer list members >know more about this. I was quite new at the time on the list and was >trying to get over all the denial by refusing to take meds, I got a >real quick instant education from the people on this list. In my >opinion I think that probably a great majority of PWP's are either over >medicated or under medicated. Here in Canada and I stand to be >corrected you can get sinemet in 25 or 50 x100/200 and CR. The >question that I have asked to many MDS Neurologists' is what happens >if a PWP at any stage only needs 18 not 25 or needs 42 not 50. I was >told 25 can be cut in half with a pill cutter to make 12.5 . However >what happens when that constant amount required is out of range of >12.5, 25, 37.5, 50, etc. and the PWP has very painful dyskensias >from getting to much sinemet to soon? How can one person be calculated > to need exactly the same dose for example for 4 hrs. as another; if >one person is 6 feet tall 225 lbs very active vs another person 5 >feet tall and 98 lbs has a sedentary lifestyle. Thats why I think the >patch could be better at metering out a constant required amount. I >know of some PWP's who have to use liquid sinemet (crush the pills with >juice as sinemet is not water soluble and sip as required) as in pill >form it just doesn't work appropriately for them. I think that since >there is no competition with sinemet as there is no other drug >discovered equal to it that perhaps the drug industry has been quite >complacent in coming out with variation level dosages, liquid form, >patches etc. I had hoped that even I would have had some other >options, for example, two nites ago as I was Chairman of a Community >Forum. Due to stress involved my 4 PM meds ran out at 6:30, half an >hour before the forum started 7 PM. When I took my meds at the 8 PM >break they refused to kick in till 9:30 PM after the forum was over. >Let me tell you being OFF is pure hell in public when two groups of >people have very different opinions on the same issue.. I own my own >business and its not well known in the community that I have PD+ MSA. >I found out very quickly is was not very advantages for the business >when the people know the owner is ill, but that's a whole other topic >for discussion. When diagnosed with " maybe PD" in 1998 by a GP >doctor first, even I did not have one clue what this disease was about. > In 48 years, I had never heard of it, no other family member ever had >it, never was able to distinguish anyone who had it publicly, even if I >would have I would have only known that that person was different i.e. >had a visible tremor, shuffled , etc. but not necessarily could tell >that he/she had PD. In the last few years finally there has been >quite a bit of publicity come out on this disease. Hopefully that >publicity will encourage the drug company to come out with a better >constant way of dispensing Sinemet , other than pills with very few >stringent levels so that we can maintain a greatly improved quality of >life longer than we do now. Our choices for a decent quality of life >are still very limited with Sinemet and the other quality of life >option if Sinemet is no longer effective of DBS. >> My neurologist, who is quite qualified, isn't worried about >>it much. >Statements like that that he/she is not worried about your dystonia >bother me greatly as a PWP. To me it sort of says hey your in pain but >what the heck you have PD. They are supposed to be able to give us a >better quality of life by some means not just say live with it. I guess >I expect a lot more from them then just ignoring some side effect which >they consider to be minor that's making your life real miserable. I >tell my Doctors from time to time that when they say, well its painful >but live with it, that what they just said is totally unacceptable to >me that sure makes them stop in their tracks and they do some real deep >thinking about other options in a real hurry. I do hope your >neurologist is a MDS neurologist. >BTW I am NOT a Doctor so these are only my personal observations and >opinions. > >Don >54/5 PD+MSA > >>Niwana >> >> >>----- Original Message ----- >>From: "Donald Diswinka" <[log in to unmask]> >>To: <[log in to unmask]> >>Sent: Thursday, March 06, 2003 7:53 PM >>Subject: Re: Night-time rigidity >> >> >>>Riverwater >>> >>>I use an alarm which wakes me at 12 midnite, 4 am, 8am to take regular >>>doses of sinemet and comtan. >>>Therefore my body gets equal dosage 24 hours a day every four hours. >>>I >>>would guess a lot of us wake up in pain to turn over cause the body >>>for >>>whatever reason refuses to turn itself over. The continuos medication >>>regime I am on does not turn me over when I should but allows the pain >>>to wake me and keeps me mobile enough that I still can turn over >>>myself. This also makes me mobile with minimal rigidity when I get >>>up. >>>The Sinemet Patch is coming very soon I was told! Yes it would be nice >>>to go to bed before midnite and sleep till 8 am just once in a while. >>> >>>Don >>>54/5 PD+ MSA >>> >>>On Thursday, March 6, 2003, at 10:29 AM, Riverwater wrote: >>> >>>>Does anybody know a way to get Sinemet into me >>>>continuously throughout the night? (A PATCH????) >>>> >>>>I've had PD for almost 14 years (51 years old now) and >>>>I've had to get a live-in because I awake in the night >>>>totally unable to roll over or move in bed. >>>> >>>> >>>>--------------------------------------------------------------------- >>>>- >>>>To sign-off Parkinsn send a message to: >>>>mailto:[log in to unmask] >>>>In the body of the message put: signoff parkinsn >>> >>>---------------------------------------------------------------------- >>>To sign-off Parkinsn send a message to: >>mailto:[log in to unmask] >>>In the body of the message put: signoff parkinsn >> >>---------------------------------------------------------------------- >>To sign-off Parkinsn send a message to: >>mailto:[log in to unmask] >>In the body of the message put: signoff parkinsn > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn