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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 > 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