Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Annie: Saw lots of responses to your post so I know that by now you know Namenda = Mematine and that it's becoming the drug of choice for early onset dementia illnesses. I hear wonderful things about it even from Alzheimers patients. I'm so glad it worked out for you and your mom and the day program. I recall how conflicted you were about it. It's always nice that something works out in spite of this blasted illness. Let us know how the Mematine(Namenda) is working out. Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi, Annie, I know you have gotten a ton of responses on the Namenda, but my dad just started on it this morning. I guess we can see how are LOs do on the new medicine together. My dad had an appointment with his neuro last Friday, and he seemed very resistant to prescribing the medicine for my dad. I asked him why and he indicated the side effects troubled him. Other patients have had gastrointestinal problems from the drug. I asked him how many patients he had on the drug, and he said three of his patients were on the medicine. It is the first time I have been really irritated by this doctor. I always liked him. He said he would prefer that my dad stay on his cholesterol medication over the Namenda. I know there is some thinking now that cholesterol medication may help prevent dementia in some way, but I think it is still very preliminary. We are so far past the " prevention " stage with my dad I am not too concerned about his cholesterol level. Anyway, I did get the Namenda perscription and we are trying it. It is really expensive, but if it works at all, it will be worth it. Our neuro should come spend a few days at my house, and then see if he thinks we should try something new or not. I don't expect miracles, but any improvement at all would be welcome. I am concerned my dad may react like Lynn's dad did as my dad is pretty far along in his LBD journey. Please let me know how your mom is doing on the new medicine, and I will let you know how my dad is doing. Hugs, Piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 My mom started on Namenda about 2 weeks ago. It seems to be helping a lot with cognition, but she's a total wreck physically since starting it. Could be coincindence, I guess. Shortly after starting it, she was out in the snow filling their bird feeders and started having chest pain. My dad took her to the ER and they said she was NOT having a heart attack, but her magnesium levels were dangerously low and her bp dangerously high. They gave her IV mag and sent her home. Two days later, she had a blood test and had to go back into the ER to have more IV mag. This has repeated every few days, plus she is taking oral supplements. THEN, she had a severe (anaphylactic) reaction to some med that she's taking, they think it might be her BP meds. She is coming down here tomorrow, and will have to have blood tests and possibly IV mag while she's here. They did a 24 hour urine on her and she is also spilling calcium, albumin and other minerals and stuff. She has to see a kidney specialist soon. She has gained 6 pounds in the last 3 days from water retention. I am really worried about her coming down here, I don't want anything to happen while she's here. She is exhausted and will most likely sleep a lot, but at least the kids will get to spend some time with her. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 my mom is on her 10th day of Namenda. She is sleeping too much now and seem so have more edema. I don't know how long to keep trying the new drug.. does nayone know if the side effects diminish? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Your post has made me think that my mom should have some of the tests that your mom did. We tried the heart monitor twice with mom but she always ripped off the connectors. Sorry you are having such worries right now. Courage Re: Re: New drug for Mom >My mom started on Namenda about 2 weeks ago. It seems to be helping a lot with cognition, but she's a total wreck physically since starting it. Could be coincindence, I guess. > >Shortly after starting it, she was out in the snow filling their bird feeders and started having chest pain. My dad took her to the ER and they said she was NOT having a heart attack, but her magnesium levels were dangerously low and her bp dangerously high. They gave her IV mag and sent her home. Two days later, she had a blood test and had to go back into the ER to have more IV mag. This has repeated every few days, plus she is taking oral supplements. THEN, she had a severe (anaphylactic) reaction to some med that she's taking, they think it might be her BP meds. She is coming down here tomorrow, and will have to have blood tests and possibly IV mag while she's here. They did a 24 hour urine on her and she is also spilling calcium, albumin and other minerals and stuff. She has to see a kidney specialist soon. She has gained 6 pounds in the last 3 days from water retention. I am really worried about her coming down here, I don't want anything to happen while she's here. She is exhausted and will most likely sleep a lot, but at least the kids will get to spend some time with her. > >Chris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 How about going to a lower dose? Is she on 5 or 10mgs? Courage Re: New drug for Mom > >my mom is on her 10th day of Namenda. She is sleeping too much now and >seem so have more edema. I don't know how long to keep trying the new >drug.. does nayone know if the side effects diminish? > > > >Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Right On Lynn! I feel as you do. We have got to start making some noise! Courage Re: New drug for Mom >Piper and all, >It makes me incredibly angry that we have to spend so much time and >energy pushing the doctors to do what I consider their jobs in >treating this disease. In the cases of the patients represented >here...they have an advocate - a helper and someone to fight their >battles with the medical community. What about the people who don't >have " one of us " to do this? Are they abandoned to the ineptitude of >the doctors? I am apalled at the bureaucracy of the medical and care >community and frankly surprised that anyone gets the treatment and >care that they need.....with out a first class b*%*h to get in their >faces. > >I know that I am making generalizations...but all of us have seen >this problem...in our own experiences and with some of the people >here. I guess it is up to us to change the establishment (do I sound >like a refugee from the 60's? I knew that experience would come in >handy some day :-) > >Thanks for letting me rant....it is better than tears. >Lynn > > >> Hi, Annie, >> >> I know you have gotten a ton of responses on the Namenda, but my >dad just >> started on it this morning. I guess we can see how are LOs do on >the new >> medicine together. My dad had an appointment with his neuro last >Friday, and he >> seemed very resistant to prescribing the medicine for my dad. I >asked him why and >> he indicated the side effects troubled him. Other patients have >had >> gastrointestinal problems from the drug. I asked him how many >patients he had on the >> drug, and he said three of his patients were on the medicine. It >is the first >> time I have been really irritated by this doctor. I always liked >him. He >> said he would prefer that my dad stay on his cholesterol medication >over the >> Namenda. I know there is some thinking now that cholesterol >medication may help >> prevent dementia in some way, but I think it is still very >preliminary. We >> are so far past the " prevention " stage with my dad I am not too >concerned about >> his cholesterol level. Anyway, I did get the Namenda perscription >and we are >> trying it. It is really expensive, but if it works at all, it will >be worth >> it. Our neuro should come spend a few days at my house, and then >see if he >> thinks we should try something new or not. I don't expect >miracles, but any >> improvement at all would be welcome. I am concerned my dad may >react like Lynn's >> dad did as my dad is pretty far along in his LBD journey. >> >> Please let me know how your mom is doing on the new medicine, and I >will let >> you know how my dad is doing. >> >> Hugs, >> >> Piper >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Piper where are you located again? Kath in Toronto Re: New drug for Mom > Hi, Annie, > > I know you have gotten a ton of responses on the Namenda, but my dad just > started on it this morning. I guess we can see how are LOs do on the new > medicine together. My dad had an appointment with his neuro last Friday, and he > seemed very resistant to prescribing the medicine for my dad. I asked him why and > he indicated the side effects troubled him. Other patients have had > gastrointestinal problems from the drug. I asked him how many patients he had on the > drug, and he said three of his patients were on the medicine. It is the first > time I have been really irritated by this doctor. I always liked him. He > said he would prefer that my dad stay on his cholesterol medication over the > Namenda. I know there is some thinking now that cholesterol medication may help > prevent dementia in some way, but I think it is still very preliminary. We > are so far past the " prevention " stage with my dad I am not too concerned about > his cholesterol level. Anyway, I did get the Namenda perscription and we are > trying it. It is really expensive, but if it works at all, it will be worth > it. Our neuro should come spend a few days at my house, and then see if he > thinks we should try something new or not. I don't expect miracles, but any > improvement at all would be welcome. I am concerned my dad may react like Lynn's > dad did as my dad is pretty far along in his LBD journey. > > Please let me know how your mom is doing on the new medicine, and I will let > you know how my dad is doing. > > Hugs, > > Piper > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Hi, Lynn, Well said! You are right on with everything you said, and I couldn't agree more. It is absolutely maddening the way the medical world is these days. I am thinking of you. I know these are tough times for you. Big hugs, Piper Quote Link to comment Share on other sites More sharing options...
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