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 Embrel 
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Joined: Sat Aug 14, 2010 1:07 am
Posts: 8
Post Embrel
Hi,
We are new to this site. My father-in-law has just been diagnosed with LBD within the past few months. He started a treatment a few weeks ago called Embral it is not covered by insurance and is private pay. Has anyone heard of this medication? If yes what was the outcome, we know it is not a cure. It is very expensive but if it can work to slow the process of this disease we can keep him home with us. He has alot of small episodes. He says they feel like a switch in the side of his head and goes down to his legs, sometimes his face changes, sometimes it last longer, and when they get really bad he starts hallucanating looking for boxes. computers, and all kinds of weird things. Are these normal things with this type of disease? What stage would you say this is? He has had the REM sleep problem for years, we have just noticed alot of these other weird things in the last 8 months.

Thanks anything will help. I am his caregiver and spend every waking moment with him,from grocery shopping too my new exercise buddy. Don't get me wrong I would not have it any other way, as long as I can do it and stay healthy. I have Aplastic Anemia and am in remission!!! :lol:


Thu Aug 19, 2010 12:35 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Embrel
Are you sure he is being given this drug for his LBD? It is a drug to treat auto-immune disorders...I have heard of it being used to treat psoriasis....

Welcome to this site. You will find a wealth of information and a caring community of people. Good luck with your FIL.

Nan


Thu Aug 19, 2010 1:05 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Embrel
Embrel is very pricey stuff. There's huge debate, as you probably know, in the Alzheimer's community as to whether this is a bogus treatment or the real deal. You can find lots of discussion of this on AD-related forums.


Thu Aug 19, 2010 1:14 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Embrel
Hi and welcome, I am new here too but have found this site to be a wealth of information, and strangely enough a comfort to just read that others understand exactly what my husband and I are going thru. I have heard of Etanercept being injected directly into the cervical spine as a 'miracle treatment' by a Dr. up near UCLA and I had actually made an appointment to take Ken for the first of a series of injections (It was going to be $5000 for the first appointment, but as you can probably relate I would have spent anything to stave off the diagnosis of Alzheimers for a period of time, as we had just gotten the official diagnosis of "probable Alzheimers" after spending almost 2 years with Ken going thru tests, scans and evaluations with first the VA then Kaiser) After doing much more research I found that this same doctor was under investigation and had used the same miracle injections of etanercept to treat other debilitating diseases and he turned out not to be a Neurologist, but a Dermatolgist. In researching Etanercept (Enbrel) I couldn't find any connection with AD and that drug. That was 2 years ago, but I think I'd ask your Dr. exactly what it is for. BTW, congrats on your remission, remember to care for yourself. While caring for your LO can be very rewarding, it can be so draining and demanding and if you don't give yourself good breaks your health really can suffer. Take care, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Fri Aug 20, 2010 9:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Embrel
Sher -
That's quite a good summary of Enbrel!
Robin


Fri Aug 20, 2010 9:35 am
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Joined: Sat Aug 14, 2010 1:07 am
Posts: 8
Post Re: Embrel
Hi,
Thanks for your help. We have started treatement along with sizeure medication (Lamotrigine) we are seeing some improvement, don't know if it's the sizeure or the Embral. Nerrologist justed added Parkinson's Disease to the list. Does anyone know about Azilect with this sizure meds and the Embral scrared to add this with the Embral. Have a call into the doctor, hope he knows what he is talking about. Sorta of scared considering Kaiser did not know how to treat Aplastic Anemia and almost put me in the grave!!!! Trust is a BIG BIG word when you are talking about a life. :P :lol:


Fri Aug 20, 2010 4:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Embrel
I doubt anyone here will know anything about the conflicts, if any, with Azilect (rasagiline), seizure medication, and Enbrel. This is the sort of question that you need a PharmD, PhD in pharmacology, or MD to answer.


Fri Aug 20, 2010 5:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Embrel
By the way, did you check a website such as rxlist.com or drugs.com for information on Azilect (rasagiline), the seizure medication, and Enbrel (etanercept)?


Tue Aug 24, 2010 11:19 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Embrel
I thought embrel sounded familiar. Be sure to ask Dr. Ringman at UCLA his opinion of it.
Roxanne

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Wed Sep 01, 2010 7:40 pm
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