My DH has ALS with FTD. He is taking Riluzole for the ALS and on our next Neuro visit (24th FEb) the Dr wants to begin Excelon for the FTD. The last time that I wrote Sunshyne said "No" to that medication and what I have read online confirms that.I am so tired of fighting for good treatment for my DH but I will have to again as I don't want to see him decline from incorrect medication. Sorry to be so long winded but what would really help me is if someone could give me some information that I could print out and take with me to the Neuro so that I can explain myself in a coherent manner. DH is currently on 40 mg Lexapro (SSRIs are recommended for FTD, correct?) and I am thinking maybe the Lexapro is enough as there are no behaviour issues or anger. Thankyou everyone. I am here reading every day and am always learning from you all.
My husband has FTD. He is on Cymbalta (was originally on lexapro) and Aricept. Most FTD patients do not do well on ariciept but we have been lucky that it helps a bit. His neuro has not mentioned Exelon--he said the next drug we might try is namenda. You might find some information/stories about drugs for FTD patients at www.ftdsupportforum.com. It is a board for people with FTD and their caregivers.
Hi Cassie, My husband also has FTD. He was on Razadyne ER & Namenda. He tried Aricept & Exelon a few years ago, however, they were not his friends. A couple months ago the Neurologist wanted to take him off both memory medications, however, I was concerned he would decline, we just stopped the Razadyne ER. I didn't see any difference, so that medication wasn't helping anyway. He still takes Namenda 20 mg. a day. I don't know if it helps. He is also on Keppra...for Myoclonic Jerks, Lexapro & Lamictal. I also have read that the memory medications really don't help with FTD, however, I am not ready to give up the Namenda, just in case it is helping.
Hi Cassie, My DH also has a major neuro disease along with something along the lines of FTD. He has a cerrebellar degenerative disease, that he has endured now for over 30 years. The mucky-mucks feel that his dementia is linked to the long-term destruction of this part of the brain and it is now expanding "globally".
So...I sure understand the frustration of not wanting one medication to mess with any other issues, especially neuro issues.
Remember the old adage: If you have seen one person with dementia...you have seen one person with dementia. Each situation is unique and what works for one, may not for the other.
We have tried a number, but have it narrowed to the following: Cymbalta(good nerve pain control) Exelon (it really helped his constant repetition of behaviors) and Serequel ( helps him sleep and keeps him more in "the now").
But that's just us. We tried Aricept when Excelon was no longer doing much alone. It was hideous for him. Rage and flaming diarehea. Not a fun two weeks.
Upping Excelon and adding Serequel did the trick. For now.
So...I guess my message to you is we all take risks with our loved ones medications and we medicate with black box warnings in hopes of some sort of peace for our tortured spouses. Not to diss Sunshine is any way ( sorry Sunshine) but I would listen to a neuro's advice on Excelon and give it a shot. But as I said...it's just my opinion and we all have them.
Good luck....rough boat..ALS and FTD..I feel for you
Cassie, my husband has FTD also. He takes Seroquel to help with agitation and sleep and he takes Namenda. Like others, I don't know that the Namenda is helping a lot but I am afraid to stop it for fear he will get worse. I wish I could help you more. I am constantly looking for information on FTD myself. Unfortunately, can't find a whole lot.
Aricept was a disaster for my husband with FTD. On of the side effects is rage-who needs more of that. My husband had all the bad effects and none on the good. Seroquel was our salvation. It was my research that brought about the med change. Our docs treated all dementias the same. Boy could our group teach them a thing or two.
Patty, you can diss away any time! <grin> I only report what I find at what I consider to be reputable sites the web. It's entirely up to you whether you want to believe any of it.
Cholinesterase inhibitors -- exelon, aricept, razadyne -- temporarily increase supplies of the messenger chemical acetylcholine to failing nerves. Since FTD does not affect nerves in the acetylcholine communication system, cholinesterase inhibitors are not helpful and may actually worsen symptoms.
http://memory.ucsf.edu/ftd/overview/treatment/single (See: Medications to avoid)
Namenda belongs to a different category of drug -- it is an NMDA receptor antagonist. There have been some instances in which FTD patients were given the drug and responded well. See:
Swanberg, Margaret M. 2007. Memantine for Behavioral Disturbances in Frontotemporal Dementia: A Case Series. Alzheimer Disease & Associated Disorders. 21(2):164-166.
Patients are currently being recruited for three clinical trials to confirm whether Namenda might be broadly useful in helping FTD patients, and study the mechanism of action. Namenda is usually pretty well-tolerated, with few side effects, so you might want to talk with the doctor about trying it out.
Thank you everyone for all the information. And sunshyne & sheltifan, at least now, the two differing views racing around in my head won't only be mine! I will re-read everyones' posts and look up all the reference info . Knowledge is power, so they say! You are a wonderful lot of people and I take my hat off to each and every one of you. Greetings from Australia, cassie.
My husband also has FTD and has been on several meds, including Aricept and Namenda. He has had a lot of rage and anger in the past, but we now have that controlled with Seroquel (a godsend) and neurontin, with a dash of clonopin for calmness in the evening. I believe Namenda was responsible for increasing his rage and violent behavior, so I am cautious about it's use. I've noticed a decline in his baseline about 6 weeks after he was taken off the Namend and the Aricept. I am thinking about asking the dr to put him back on Aricept to see if it helps him regain some of his cognition.
Good luck and I hope whatever is decided it works!
My husband's drug reactions are the same as most of the above. He has FTD also, and couldn't tolerate Aricept or Exelon (adhesive from patches destroyed his body). He has been on just 5mg of Namenda for several months..when he had a larger dose it made him a zombie. As of today he is upping the dose, so we'll see what happens. His Neuro admited that there really isn't much that helps FTD (interesting side note..he didn't know what I meant when I referred to FTD! He uses the entire name. Me thinks he is rather old school)
Thanks LFL & kathi37. And kathi37, not many that I come across in the medical profession knows what FTD means either. None of it sounds like smooth sailing so I am thinking that perhaps I should try none of the drugs? With the ALS, the prognosis is not good (1-2 years) so am I best to leave things as they are? There are no problems at the moment. DH has the usual FTD symptoms but no rage etc: and the depression and repetitve behaviours are controlled with the Lexapro (40mg).Would no medication for the dementia be the wrong thing to do? I am so tired from all the worry and responsibility and all I have to look forward to is worse to come.Where are we supposed to find the strength to keep going?
You are right bluedaze, I do find the strength here. I came here in March last year when Dh was (mistakenly) diagnosed with Alzheimers and when it changed to FTD I didn't know if I was still entitled to be here but I was not going anywhere! There is always someone here dealing with so much more than me so I guess that is what keeps me going because I am lucky to be able to have these days now, where things are ok and my Dh still smiles at me sometimes so that gives me something back and I do try to take it just one day at a time as you all suggest. I do usually only "lurk" so for me to be posting must mean that I am really not coping as well as I thought but just to read a response from others who understand is such a ....... I don't know what the word is but it makes this journey so much easier for me. Thankyou.
Cassie, I'm not sure if it applies in your situation, but in Sept. 2008, ALS was declared a service-connected disease (i.e. VA benefits). http://www.military.com/news/article/vets-with-als-to-get-va-benefits.ht
PatB, thanks but I am in Australia. (Joan's amazing website reaches far & wide) That was intersting about the ALS being declared a service- connected disease. There is so little known about it, just like dementia.
Bluedaze..yep..that's the first thing i thought of when I was given the DX....not so funny now.I, too, wonder where I'll find the strength to go with this. This forum is a true life saver, but I don't have the ability to deal with all the @#@* that is coming...then Divvi gets on and tells some wild tale about her hooligan..makes us laugh/smile and wonder at her courage. It's a trip, that's for sure.
cassie - one of the neurologists I took my dh to a couple years ago said he didn't think the drugs for AD were worth it and he still prescribes them but his personal opinion was what was the use. I thought at the time I might follow that and stopped his AD meds for a couple weeks and our pcp and local Neuro were shocked and though I shouldn't stop them. I started them again and the time he was off them didn't seem to effect anything. But now, if he doesn't take them for a day he slides downhill fast. So, I guess it is a personal choice. Good luck.
A month ago G stopped taking Namenda on PCP's recommendation, and went on 50 mg of Seroquel. He is also taking MCT Fuel a couple of times a day. This past week it became obvious he has improved in nearly all areas. He eased off the Namenda, but I feel it should be all but out of his system by now. We talked about it last night, and he says he simply feels a lot better. We actually had a DISCUSSION ...unbelievable. Could just be the roller coaster thing, but it is amazing some of the things he is doing...actually working outside, reminding me when I forget to do something ( I love that one), back to daily doggie walks..all sorts of wee things that normal people would scoff at, but not me! Take what you can when you can!
kathi, i think its taking him off the namenda. mine also improved alot after it was out of his system-my DH was on namenda since it became available! if i'd only known--.. some just dont do well on it but afraid to try off it! so glad for you both. divvi
I gradually took DH off the Razadyne and Namenda per Neuro advice (and cost). I have noticed a bit of decline in speech, and maybe in the walking, but I notice a BIG improvement on the agitation and anger. He has AZ.
mary ask his dr how to wean him. but honestly we just stopped the namenda ..but be safe and ask! gmaewok, same here, decline in speech and writing ability but anger/aggitation are NIL! over a yr now. divvi
Mary and others, I was referring to what Bluedaze and Kathi said about original FTD, remember the florist, oh well, it's not funny if no one gets it....................
Cassie...my dh has ftd also. Thank goodness no rages or aggression. We tried Aricept on the advice of a neuro. but the results were disasterous. I'll spare you the details. I have chosen not to treat the ftd. Dh takes 20mg lexapro for slight depression and to keep hypersexuality under control.To treat, not to treat or how to treat is a very personal choice. You can try anything that might help and change your mind at anytime.I like you "lurked" for several weeks before posting. Joining this family is the best thing I could have done for myself.We welcome you with open arms and open hearts. cs