Decreasing dopamine treatment levels In l... - Cure Parkinson's

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Decreasing dopamine treatment levels In late stage Parkinson’s disease.

BoBo9-Breeze profile image
15 Replies

I am questioning the neurological position that decreasing dopamine treatments is a proper method for a patient exhibiting a deteriorating clinical picture.

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15 Replies
LeharLover62 profile image
LeharLover62

What’s the rationale? My husband can’t handle dopamine any longer without becoming psychotic. If he could handle it, he certainly would still be taking it. He’s had to reduce it every year now for the past 3 to avoid going completely insane. But you would know if that were the situation I think?

Beanie57 profile image
Beanie57 in reply to LeharLover62

Just been through this with my PWP.... confusion, delirium, diagnosed with End stage Parkinson's & Lewy body dementia with increase in LD. We questioned due to sudden onset related to increase in meds. However, wasn't the clinician recommending reducing it was us. Finally got them to listen to us... reduce meds - no confusion, delirium good long and short term memory, I have my PWP back after numerous fights!! Always question.

LeharLover62 profile image
LeharLover62 in reply to Beanie57

yes, it’s like he comes back down to earth once the dopamine is out of his system. Of course he can’t walk, but he’s a monster when the dopamine is too high, so I prefer him not walking. Sorry you’re going through it.

Beanie57 profile image
Beanie57 in reply to LeharLover62

We are lucky because my PWP has very few Motor symptoms so we haven't got that balance to work out. Makes me wonder and very very angry ( as a retired nurse) how many patients are told it's the disease progression and they are not questioning and trialing that worsening symptoms are actually due to side effects of medications. Thinking of you.

glenandgerry profile image
glenandgerry in reply to LeharLover62

Similar story with my husband. He takes very little levodopa now and is much better for it. Was diagnosed 17 years ago. He can walk a little but certainly no more than half a mile. His memory comes and goes. On a good day, can be very sharp. On a bad day, forgets what he's saying halfway through a sentence.

MarionP profile image
MarionP in reply to Beanie57

Yes, always question. Physicians are not scientists, don't expect them to always be. Scientists are investigators, physicians are clinicians, ie, technicians. Become familiar with the difference because physicians need your help for ongoing feedback and titration, identifying errors and adjusting accordingly.

Plus, one can have more than one co-occurring condition, having both Parkinson's and progressive lewy body dementia is a prominent common example. Having one does NOT rule out having another at the same time...and a treatment or palliative substance can simultaneously ameliorate one condition while exacerbating the other. In clinical experience, one discovers whether these are the case by trial and error, there is no such thing as "one and done."

Beanie57 profile image
Beanie57 in reply to MarionP

The issue I have is they took the 'picture' at the time of admission and made their diagnosis- End stage Parkinson's ( it was not) Lewy body Dementia ( it was not ) but did not think/question could it be side effects from meds/increase in meds , which it was!

MarionP profile image
MarionP in reply to Beanie57

Well, show them my comments above and ask them whether they should refund your money. As a former clinician, what I said above I stand by. Professionalism is not something guaranteed in medical training or clinical training. It's a matter of personal sense of responsibility within each doctor, and so can be rather variable. I would feel no compunction at all to go back to them and ask them the following question: "Do you even know what you are doing? And if not, why not?"

On the other hand, you may well have those two diagnosis and they are correct, because they match up with the symptoms you have talked about. It's just that you may have found a way to help or exacerbate a few of the symptoms...plus yes side effects do cloud the picture too (in fact that's all part of a diagnostic training game interns and residents often play, to try to fool each other into finding a diagnosis despite having several false leads added into the mix along the way...among competing contributing problems... It's a variant of the sales game "bait and switch." In fact the whole thing was made very much more famous and familiar by the television show House, which uses the principle on every one of its episodes.

Beanie57 profile image
Beanie57 in reply to MarionP

Totally agree. I certainly am going to go back to them, as a nurse prescriber, they did not practice the basic principles of prescribing . However, as we are in the UK and NHS so no money involved. I'm not interested in financial gain, I just don't want others to go through what we have been through so the best I can ask is that they provide us with a 'reflective assessment' so that they learn for future presentations.

park_bear profile image
park_bear

Was not aware of this. Can you provide a reference to this effect?

SilentEchoes profile image
SilentEchoes

This was the case for my mother, she didn't need rytary at the end of her life. She also had LBD and hallucinations, she wasn't aware of her condition or troubled by it. You don't grieve what you don't know.

MarionP profile image
MarionP in reply to SilentEchoes

Perfect example.

tandolino profile image
tandolino

@

I am sorry your husband is going through this.I was diagnosed with PD in 2017. I have been working a very stressful job until this past October 2022. I am taking 11.5 tablets of C/L 25-100 and 1 tablet of 50-200 per day. could you share how much C/L your husband was taking before you started to reduce it?

thanks

KERRINGTON profile image
KERRINGTON in reply to tandolino

Hello, Are you stilling ok on 11.5 tablets for C/L 25/100 & 1 tablet for 50/200 ? I take 8 C/.L 10/100 8 times a day, and my neurologist said to reduce it to 5 6x a day. My off times are bad.

tandolino profile image
tandolino

I am taking 13.5 tablets per day now and 1 50/200 er per day now.

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