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 Treatment Nightmare 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Treatment Nightmare
Hi All:

Recently I took my husband to a new cardiologist because his PCP wanted him evaluated to get him off Coumadin (Warfarin). Much to my surprise this cardiologist not only wanted to take him off Coumadin, but also wanted to do a cardioversion on him. For those of you who don't know what a cardioversion is, it's where the cardiologist shocks your heart back into normal sinus rhythm. But there is a three week preparation for this test where you are loaded up with a medication that is supposed to regulate your heartbeat. HOWEVER, there are some side effects from this medication that can throw a person with LBD off his/her baseline....and boy did it ever do that with my husband!

The name of the medication the doctor prescribed was Amiodarone, and as we soon discovered, it had a major interaction with the Coumadin my husband was taking. In fact, the first PT/INR test that was performed after my husband began taking Amiodarone showed this medication was enchancing (souping up) the Coumadin and making my husband's blood too thin. So I contacted both the Cardiologist's office and my husband's PCP, neither of which wanted to pull his Coumadin for the night (which had been standard practice with my husband whenever this happened in Florida). The Cardiologist's office wanted my husband to cut his Coumadin dosage in half for the night and his PCP wanted him to continue with his usual dosage. Against my better judgement, I listened to and followed the PCP's orders. Five days later, when I took him to the emergency room, my husband's blood was even thinner; thereby increasing his risk of having a heart attack or a stroke.

Hang onto your seats folks, because there's more to this story. As I mentioned, the side effects that come with Amiodarone are not good for someone with LBD. They include: feeling more tired than usual (which explains why my husband spent one whole weekend in bed sleeping), heart beating very fast (which explains the delusion my husband had one morning about going "upstairs" to see the cardiologist about his pounding heart), feeling lightheaded (which explains how he felt every time he stood up while on the medication), weakness (which explains why my husband was so weak that he couldn't stand up by himself and I had to call for an ambulance to get him to the hospital, where it took four people to transfer him to the hospital gurney), nervousness (yep, that too increased while he was on this medication), and of course, it caused his tremors to get worse. This medication can also cause a feeling of pins and needles in the hands, legs or feet (which it did in my husband's thighs), muscle weakness, uncontrolled movements, poor coordination, and trouble walking (all of which happened to my husband). During that period, my husband kept telling me that he felt like his legs were giving out underneath him (and indeed they did twice while he was on the medication). After the second fall, I took him to his PCP's office and got a prescription for a wheelchair.

Now, to add to all this mess, when I took him to see his new neurologist while he was on this medication, the neurologist prescribed a non-addictive anti-depressant to help my husband sleep at night - Trazadone. Well, as I later learned, even though the Trazadone decreased the effects of the Coumadin, it increased the affects of the Amiodarone, which, in turn, increased the effects of the Coumadin. Wow!

And the one person who could have pointed out how these medications interact with one another, who, in turn, didn't do so, was the pharmacist who filled those prescriptions. So, this afternoon I switched pharmacies.

Needless to say, the Cardiologist took him off the Amiodarone and Coumadin, put him on an aspirin regimen, and the cardioversion has been put on hold, if indeed, if ever takes place. Interestingly, the day after my husband was taken off Amiodarone, he was able to stand up again by himself, something he couldn't do the previous day, because he was just too weak. Also, it has now become necessary for my husband to get physical and occupational therapy again, in an effort to get him back to his baseline.

Now, to add insult to injury, this morning when I took my husband back to his PCP, we were informed by her that she really is a family practice doctor, rather than an the internal medicine doctor we were led to believe she was. And she let us know that my husband should find another doctor, because she no longer wants to treat him....all because I got onto her for her part in all this mess. Oh well, good riddance!

So now I am stuck with a dilemma. My husband has another appointment with the cardiologist next Friday, and my instinct is to not give him another chance to prescribe another medication for my husband, that is not meant for his condition. Oh yes, that's another thing. Amiodarone has not been approved by the FDA for patients with A-Fib. So this doctor was prescribing this medication off label. Any advice, or words of wisdom you can offer as a solution for my dilemma will be greatly appreciated.

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Beth


Sat Jul 28, 2012 1:38 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Treatment Nightmare
Well, first of all, be thankful he didn't hemorrhage when he fell! Secondly, if I were you, I'd make sure he has a good neurologist, experienced in LBD or at least PD and give him/her the 'last word' in medications and find a PCP who will defer to him/her in medical decisions. This is what we have done. I have a note in Derek's chart: "All new medications or medication changes MUST be approved by his neurologist!" It's the only way to avoid potential disaster.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 28, 2012 1:54 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Treatment Nightmare
Beth,
I can't speak for the medications or the procedures that could have taken place but to me it sounds like a nightmare and then to add to insult you now have to find a Doctor willing to treat your husband, Pat is right you need a Neuro who is willing to have the last word when it comes to meds as this LBD reacts so poorly to many meds, I know you mentioned in another post that they wanted to try Risperdol, I can only speak for what happened with my husband, he didn't do well with it and we ended up with Seroquel which worked for him but because so many with LBD react differently to meds not all do well with Seroquel, but I have been told that it does empty out of the system faster than most if that is any help !

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Irene Selak


Sat Jul 28, 2012 7:48 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Treatment Nightmare
Pat & Irene:

Both of you are so correct about how medications affect people with LBD. My husband has had congestion in his chest the past few days and I have been giving him Mucinex to break up the congestion. But even that medication has been causing him to feel tired and weak, thus making it hard to move him to the bathroom and then to bed. Yet, this morning he was able to get out of bed and walk to the bathroom without his walker, go to the bathroom and get back to bed by himself. This disease is so weird and so very frustrating!

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Beth


Sun Jul 29, 2012 11:47 pm
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Posts: 3213
Location: WA
Post Re: Treatment Nightmare
Beth, I really doubt that plain Mucinex [guaifenesin] would have such side effects. It's probably one of the safest, most trouble-free meds Lewys [or anyone else] can take. JMO.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 30, 2012 12:37 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Treatment Nightmare
Beth,
I agree, I don't think Mucinex is the problem, I found my husband was always so much better in the early mornings and then he would start to teeter off as time went on the window of being able to do some things became smaller and smaller !

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Irene Selak


Mon Jul 30, 2012 6:25 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Treatment Nightmare
Irene, I am finding out the same from my husband. Mornings were so good and at times I would say to myself, "there's nothing wrong with this man" Lately I find that window of independence is getting shorter and shorter and I am getting more tired and require a nap after lunch. He is so sweet and will sit down next to me until I get up again. He is very ambulatory and strong but just can't figure things out. He can't figure out how to put a shirt on without getting it backwards. I couldn't care less if he wears his clothes backwards or inside out, but he cares. I'm just thankful he is still functioning.
Mary


Tue Jul 31, 2012 12:09 pm
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Posts: 1978
Post Re: Treatment Nightmare
Mary,
That's nice that your hubby will sit next to you while you take a little nap, mine was like that too but wasn't always like that we went through som ereally crazy times but once they passed things calmed to the point he would stay still a bit.
Earlier on we could almost count on the whole morning being good but as time went on as I mentioned that window became smaller and smaller !

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Irene Selak


Tue Jul 31, 2012 12:48 pm
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