Re: Re: Weaning Off Sinemet

March 11, 2008

Dear Lorraine,

Bravo if the Sinemet continues to help your dear husband - I do wish my mom

could continue on it. Have you talked with your husband's doctor about the

different dosing methods that avoid the the " wearing off " syndrome? There are

some innovative and safe ways to do that, including overnights.

Good wishes!

Lin

lbellomy51 wrote:

Janet and Kathy

I have taken comfort in your words about Sinemet. After hearing so

much about sinemet not being good for patients with LBD it has

concerned me that my husband takes a lot of it. He would have no

mobility without it, and I could not maneuver him at 215 pounds

without the help he gives me. The sinemet/comtan does give him times

during the day that he can walk around but when it wears off it can

take hours for the next dose to kick in. Thank you for sharing.

Janet, there is a similarity in behavior that my husband does with the

sheets and pillows. And there have been so many times I have fussed at

him because he has taken the pillow out from under his head and put it

elsewhere. Of course I have to get it and put it back. I did not

attribute it to wearing off of sinemet as I do give some at night also

just not as much.

Lorraine

> As with so many medications, our LOs react differently. Jim has

been on Sinemet for over a decade (Began in 1994) and I believe it is

what keeps him able to do weight bearing and a few steps forward with

assistance and a walker. He is on 25/250 4X a day. When he started on

Sinemet it was a much lower dosage. (The Yellow Sinemet Pill instead

of the Blue Sinemet Pill that he is on now) He does not have any

tremors, but when he misses his Sinemet his hands will shake and he

gets fidgety and will pull on bed sheets and pull pillow cases off of

pillows. In ER he does this when he has missed his time for Sinemet. I

pray this medication does not lose its effect, because I believe it is

what keeps him going.

> If ever he is bedridden I will stop the Sinemet possibly, but if his

hands shake and he gets fidgety, it may not be worth it.

>

> Weaning Off Sinemet

>

> Several members have indicated that a time may come for weaning off

> Sinemet. Others have suggested that maintaining a small dose might be

> wise. Naturally each case is different and caregivers will make

> changes in consultation with physicians.

>

> From my perspective, I would ask a lot of questions if it was

> suggested that stop it entirely. In 2002 he had a parkinsons

> meds honeymoon. He was weaned off all his PD meds in an inpatient

> setting and it almost killed him. Not to mention his dementia went off

> the charts because he was hospitalized and ende dup needing lots of

> antibiotics.

>

> His muscles became so rigid he was in great physical distress. He

> could not move his bowels because the natural contractions that move

> stool stopped, and he contracted pneumonia. The medicines for

> pneumonia led to renal failure, and also killed all the good

> intestinal flora so that his constipation was followed by a botulism

> related diahrrea that almost killed him.

>

> Note that all this was under the care of neurologists who gradually

> returned him to his sinemet, with less comtan and added seroquel. I

> will consider lessening his dopamine producing and dopamine agonist

> drugs again if a doctor advises, but I will have many more questions

> in advance, and will question dropping it completely. I will need to

> be convinced that akinesia with it's bad effects will not be a result.

>

> Kathy

>

> Welcome to LBDcaregivers.

>

March 11, 2008

Dear Lorraine,

Sure hope the new MD will be helpful! A good neuro can guide you toavoid the

" wearing off " times so that even eating doesn't interfere with the Sinemet being

absorbed. My mom had that problem, too, but it was addressed by our 3rd MD with

some useful strategies the first 2 docs never even suggested.

Please let us know how the appointment works out.

Have a pleasant evening.

Lin

lbellomy51 wrote:

Lin, At the present time we are going to start going to VA doctors. I

do not know if that means a VA dr at a VA hospital nearby or a

'civilian' neurologist that VA contracts with. His first appt in Tues

3/18. In asking questions when making the appt. with the primary care

doctor, I understood it was a civilian neuro. That means we may be

starting over. I do give him 10/100 sinemet in between the 25/100

sinemet/comtan. Generally when he eats (and that can be as little as

a glass of milk)that is when the meds do not absorb so no mobility.

Lorraine

> > As with so many medications, our LOs react differently. Jim has

> been on Sinemet for over a decade (Began in 1994) and I believe it is

> what keeps him able to do weight bearing and a few steps forward with

> assistance and a walker. He is on 25/250 4X a day. When he started on

> Sinemet it was a much lower dosage. (The Yellow Sinemet Pill instead

> of the Blue Sinemet Pill that he is on now) He does not have any

> tremors, but when he misses his Sinemet his hands will shake and he

> gets fidgety and will pull on bed sheets and pull pillow cases off of

> pillows. In ER he does this when he has missed his time for Sinemet. I

> pray this medication does not lose its effect, because I believe it is

> what keeps him going.

> > If ever he is bedridden I will stop the Sinemet possibly, but if his

> hands shake and he gets fidgety, it may not be worth it.

> >

> > Weaning Off Sinemet

> >

> > Several members have indicated that a time may come for weaning off

> > Sinemet. Others have suggested that maintaining a small dose might be

> > wise. Naturally each case is different and caregivers will make

> > changes in consultation with physicians.

> >

> > From my perspective, I would ask a lot of questions if it was

> > suggested that stop it entirely. In 2002 he had a parkinsons

> > meds honeymoon. He was weaned off all his PD meds in an inpatient

> > setting and it almost killed him. Not to mention his dementia went off

> > the charts because he was hospitalized and ende dup needing lots of

> > antibiotics.

> >

> > His muscles became so rigid he was in great physical distress. He

> > could not move his bowels because the natural contractions that move

> > stool stopped, and he contracted pneumonia. The medicines for

> > pneumonia led to renal failure, and also killed all the good

> > intestinal flora so that his constipation was followed by a botulism

> > related diahrrea that almost killed him.

> >

> > Note that all this was under the care of neurologists who gradually

> > returned him to his sinemet, with less comtan and added seroquel. I

> > will consider lessening his dopamine producing and dopamine agonist

> > drugs again if a doctor advises, but I will have many more questions

> > in advance, and will question dropping it completely. I will need to

> > be convinced that akinesia with it's bad effects will not be a result.

> >

> > Kathy

> >

> > Welcome to LBDcaregivers.

> >

March 12, 2008

my daddy took 1/2 dosages of sinemnt one at nite and one in the nex tmorning adn

we

were shocked it turned dad into an evil uncontrollable mnstr, i would wean

orff slowly but defiinetly get off of it, many of our lo's complained of

lissues mostly aggreesion or inappropriate commets activites. dad hated lbd he

called it teh litttle man in his head. cute huh>> goood lcuk and hugs. saron

jos jslowly we were lucky we juststopped t sine dad onl took 2 doesages of it

i ahd e Lin, At the present time we are going to start going to VA

doctors. I