Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Kathy and Ron, I think this is the reason in going off (or on) drugs we talk about " go low and go slow. " If we take them off one pill and one med at a time, it is easier to see the results and turn them around quicker. I think MD's think they can just remove all and they can't with these patients. Ron, if you want to consider removing a drug, try one of the pills a day for a few weeks. Then try, if things don't change or are better, try another. And you might want to talk with your MD for their input.. The other thing people have talked about here is how the PD drugs and dementia drugs fight. So there needs to be a balance that works for anyone. Just my thoughts. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Dear Friends, Isn' the frequent disparity between our LOs' reactions to meds and med changes remarkable? It is so helpful to get everyone's own experiences. One more - out of thousands - of reasons I'm grateful for this group. Lin Janet Colello wrote: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 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. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 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. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 > > > 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. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.