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 Cymbalta, good or bad 
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
Post Cymbalta, good or bad
My Dad has Lewy Body and has had a rough time this year, largely due to Serequel and Risperdal. When we started to learn about the drug sensitivity associated with Lewy Body (largely through your forum and a terrific support group in Wilmington, NC), we took him off everything except Namenda, Aricept, and vitamins. It looked at the time like he was headed for a nursing home. He was running away, paranoid, and hallucinating. Still, Mom and I were NOT going to give him something that could make him worse. We decided to tough it out. A miracle happened. He got MUCH better. While we were desparately waiting to get him in to see a gerontologist, he became less angry, more lucid, more like the Dad we knew. He was the best man in his granson's wedding. He participated in a 4th of July golf cart parade and won third place. We saw him SMILE!

He saw the gerontologist July 10th. She seems GREAT. She recommended Cymbalta 30mg once a day. Do any of you have any experience with it? I can't tell you ALL how much your posts have helped.

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Linda
Father has LBD, lives 400 miles away


Tue Jul 24, 2007 11:16 am
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Dear Linda,
Welcome to the LBD forums, I am so glad that after the adverse reactions your Father had with different meds that he was taken off them and is better, you are lucky sometimes before a family realizes it is the meds making their LO sick the damage is done and often can't be reversed, My thoughts are always "Less is Better" in LBD, I know some are needed. I really can't comment on Cymbalta, I have never had dealings with it, I am sure someone will step forward and comment more about it to help you! :)


Tue Jul 24, 2007 1:13 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Cymbalta works on the serotonin and norepinephrine pathways, which is a combination that is unique among the marketed antidepressants. It can really work in people who need it, and it's generally well-tolerated. It's used in other countries to treat overactive bladder symptoms as well.

The big question is, what are they trying to treat.....if the biggest depressive symptoms are apathy (not wanting to do things), hypersomnolence (excessive sleepiness), anhedonia (not getting pleasure from things that were formerly fun), I would tend to point to the psychostimulants as a better, faster-acting, shown-to-be-useful-in-DLB alternative to antidepressants.

Modafinil (Provigil) is becoming an important part of DLB treatment - people take it and feel better/sleep less/move more in a matter of days, not weeks, and the side effects are generally mild and tolerated (headache at first). It's also getting traction as a therapy for depression in the non-demented elderly.

I would really encourage you to pursue this path with your dad's doctor - I'm insanely glad we did. What sent us in this direction originally was my awareness of its use in narcolepsy, and at one point, Cal was sleeping 20 hours a day and could fall into deep REM sleep at the drop of a hat - he didn't even *have* a DLB diagnosis at that point. Imagine our surprise when we found out, a month later, that one of the leading experts in DLB uses it as a first-line agent.

Use the search link at the top of the page to find posts with Provigil, modafinil or psychostimulants to see some examples of our experience.

Eric

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Jul 24, 2007 1:36 pm
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
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Eric, Dad does not have the symptoms you mentioned. In fact, his are almost the opposite. I would describe him as restless, overly active, pacing, agitated, up at dawn every day, always wanting to go somewhere and not remembering that he has gone, angry, paranoid, hallucinating. He has macular degeneration, but was driving when I persuaded he and mom to come to Florida in June. The "reason" for their visit was to get some dental work. The other reason was to take him to doctors I knew and trusted trying to find out what was wrong with him and hopefully to persuade he and mom to stay here so we could take better care of them. One day he decided that I was trying to "put him in the crazy house." Nothing I said or did would convince him otherwise. Finally, I just told him that I didn't know what to do. He told me to just leave him alone. I thought that he had gone to the guest house, where he and mom were staying. An hour later I discovered that he had run away when the police brought him home. His wallet was gone. We used his missing license to persuade him not to drive anymore. He saw people, mostly children, almost constantly when no one was there. One day he had gone to the guest house to get something and was gone too long. He had bent the screen and taken it out of the window, opened the window, and was about to crawl out because he could not find the door, which was 4 feet away.

He could not wait to go home. Then, when we took him home, he did not recognise it as being home for a few weeks. He even ran away from his real home a few times. When we started learning about LBD and took him off the Risperdal, he slowly improved.

The new doctor wanted him to have an MRI, but he is clasutophobic and I am afraid that anything they give him to relax him could cause him harm. I hate to not comply with the doctor's orders, but when I weigh out the good vs. the harm, I can't see that the MRI is going to improve his quality of life so I cancelled it.

I had a little trouble getting on the forum. During that time, Mom gave him the Cymbalta. I had asked her to wait until I could ask, but she was in the middle of the storm. He has taken it about a week now. He sounds terrific on the phone. Mom says he isn't seeing things anymore. He actually sits down once in a while. As far as I know, he has not had any bad reactions and he doesn't seem to be sluggish, but he is calmer. I guess I am holding my breathe, waithing for the ceiling to crash, but so far, so good. As long as you haven't heard anything bad about Cymbalta and it seems to be helping in Dad's case, I'll go along with it for now. From what I have observed about you, Eric, if ANYBODY on this earth would know if it would be harmful, it would be YOU! Maybe we will try to relax and enjoy the good times while we can.

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Linda
Father has LBD, lives 400 miles away


Last edited by Linda Ferrigno on Sun Aug 26, 2007 5:58 am, edited 1 time in total.



Tue Jul 24, 2007 5:06 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Linda, Jerome was on Cymbalta for about three weeks when he had a massive reaction ... he became crazed and violent. Had to call 911 and he was taken to a psych hospital. His psychiatrist and the hospital psychiatrist agreed that it was a reaction to Cymbalta. They stopped it immediately and he has never had another episode remotely resembling that one. So just keep an eye out.

As for an MRI, is there a hospital or imaging center in your area with open MRI? Much better for folks with claustrophobia who otherwise won't get one even though the resolution is a bit lower than with standard MRI.

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Renata (and Jerome-in-Heaven)


Fri Jul 27, 2007 3:54 am
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
Post Cymbalta, good or bad?
Renata,

Dad has been on Cymbalta since July 12th. At about three weeks he started becoming more agitated. It progressed to hostility, running away, anger. Mom won't consider taking him off unless the doctor gives her something to replace it. Yesterday, it became a crisis. Is Jerome on anything for anti-anxiety?

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Linda
Father has LBD, lives 400 miles away


Sun Aug 26, 2007 6:25 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Linda --

First, please share our story with your mother. Even the possibility that the Cymbalta is having an effect similar to what it did in our case means that both she and your dad might be in danger.

Prior to Cymbalta, Jerome had been on Prozac for years -- worked well and no bad reaction. The (new) psychaitrist switched him to Cymbalta for absolutely no reason. I guess she figured newer is better.

While in the psych hospital after the violent rage episode, the attending psychiatrist spoke with Jerome's shrink and they agreed to stop the Cymbalta immediately -- no tapering.

Jerome went back on Prozac (for mild depression and OCD -- we used to have a VERY clean house :) ), and continued on clonozepam as needed for anxiety.

We immediately found a new psychiatrist, who also added Trileptal for bi-polar disorder.

It's been almost a year now from our night of hell. There have been no reoccurrences. Had I had the energy, time and money, I would have pursued legal action against the psychiatrist and the drug company. Jerome lost his mind that night, and I easily could have lost my life.

If your mother hasn't already, you should consider calling the doctor and insisting yourself that the meds are causing a bad and worsening reaction. Before LBD, I used to be like your mom -- doctors were the professionals who could never make a mistake. If your doctor does not respond to the warning bell you are sounding, talk to another doctor.

Please let me know what happens.

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Renata (and Jerome-in-Heaven)


Sun Aug 26, 2007 12:41 pm
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
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Renata,

We have taken Dad off Cymbalta. No one would help us and Dad was begging us not to give it to him anymore. We all talked and decided to work together and give him a chance. He was on the lowest dosage already. Surprizingly, it has been no worse than being on the drug. He has had a few episodes of being upset, but we have agreed that he should stay home then and not take a walk in 90 degree heat. It seems that I can talk with him and help him through it. Sometimes he makes no sense to at all. Last night he refused to go to bed with "that grey-haired woman" (my mom), so we let it go. We told him he could sleep in the other room if he wanted. After 30 minutes, he forgot all about it. This is something that clearly could be the disease, so it's OK. He had been so hungry these last 3 days. He lost 7 pounds on the Cymbalta and he was already under 140. I don't know how long it takes to get out of his system, but it does seem that he is better every day.

In the past I would never have attempted this, but putting more of that poison in him was not an option. We figured we could call 911 if it became too much and someone would come and help us.

I see drug reps in the doctor's office every time I'm waiting, setting up lunches for the staff. I'm thinking that the Cymbalta rep must have a better menu. When we went back after a month, the PA was trying to get us to double dad's dose. When you go on Cymbalta.com there is no mention of any of the serious side effects, just things like constipation and dry mouth.

Thank you for caring and for speaking up. Had it not been for you, we might have accepted that dad's symptoms were "just his disease." You might have saved both of my parents lives.

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Linda
Father has LBD, lives 400 miles away


Thu Aug 30, 2007 4:04 am
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Hi Linda,

Have you gone to the RXlist site yet I just checked and I looked under Side effects under Cymbalta and there were things there that would red flag it for me, the major problem is there is no one drug that helps any two people with LBD, its sad and I pray one day there will be relief for the people enduring this illness.

http://www.rxlist.com/cgi/generic/cymbalta_ad.htm


Thu Aug 30, 2007 10:53 am

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Linda, I know how scary it is to take a medication decision into your own hands and it's a step I would never suggest to anyone unless, as in your case, a physician seems either oblivious to or ignorant of the manifestation of serious -- even dangerous -- side effects in a complex case like your Dad's LBD. The next step for your family, hopefully, will be to find another physician in your area who is either knowledgeable or who is willing to learn (along with you) about LBD and how to manage it.

I wonder if LBdoc knows of anyone doing studies on LBD and Cymbalta? Or if the pharma company that makes Cymbalta has ever been notified of some of these episodes? I can't imagine a pre-release study would have utilized LBD patients, so they may have no idea this is happening.

BTW, Jerome's former psychiatrist had us double the Cymbalta dose after the first week or ten days. It was after the doubling that all hell broke loose.

Good luck with your next steps. I will tell Jerome about your experience so that he knows that SOME good came of what he considered the worst night of his life. It's been almost a year and he STILL asks if that will ever happen again and whether there is now a "record" that he is a violent lunatic. I think your story will help. Thank you!

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Renata (and Jerome-in-Heaven)


Thu Aug 30, 2007 2:30 pm
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
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Irene, I remember your wise answer to my original question, "Cymbalta, good or bad?" You told me that "Less is better" in LBD. I know we won't have dad home forever and that he probably won't have the wonderful end to his life that I am still praying for, but I think we have been burned too many times to try any more drugs.

Next week is my 60th birthday. For my ultimate present, I dreamed of taking mom and dad to New York (where he grew up) and having a blast. WE ARE GOING!!!! He was once a bellman at the Waldorf Astoria. We are staying there. He once dated a Rockette. We are touring Radio City Music Hall. (Maybe we will see her picture.) We are eating Nathan's Hot Dogs in Coney Island, going to Brighton Beach, looking for Kings Hospital in Brooklyn where my brother was born, seeing the Lion King, taking a carriage ride around Central Park and taking a LOT of pictures. Mom and Dad deserve some fun! I have his Alzeheimer's bracelet and his clothes tagged just in case he gets lost. Every time we talk he asks me if we are still going. I don't know which of us is more excited!

Renata,

Dad went to the Neurologist today. He did not comment on the Gerontologist's unprofessional behavior, but his eyebrow did go up. I have made an appointment with Burton Scott at Duke. He was wonderful with the wife of the gentleman who runs the Wilmington Lewy Body Support Group. We have decided to keep dad on as little medication as possible for now. Every time we try something it puts him into tailspin.

I find it interesting that Jerome's psychiatrist doubled the dosage after just 10 days. When dad went back for a 30 day check-up, they were trying to double his. Thank god we did not. I'm fairly sure dad would have fliped out more than he did.

Right now I'm in the last month of a gigantic fund-raiser for our local children's hospital and can't exactly quit. However, when I get a minute, I'm going to talk with some knowledgeable friends about the best way to get Cymbalta's attention. I certainly don't want others experiencing HELL.

I remember when I was fighting cancer and taking tamoxifen. I would report symptoms to the doctor and thought he was writing them down. When I transfered my records, I found that he reported that I was having NO side effects! Duh! He was being paid to do the study. Wonder what relationship Dad's FORMER doc has with the drug company?

Please tell Jerome that he is our angel! You, too, Renata!

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Linda
Father has LBD, lives 400 miles away


Thu Aug 30, 2007 8:58 pm
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