- Quetiapine/my experience

[Guest guest]

Welcome - to the group we all love but wish we had very different reasons

to be part of! I hope you find the support you need here. Please feel free to

speak your mind and never be embarrassed to ask what might seem the silliest

questions. We've all been there!

Oh boy! Quetiapine!!! Mmmmmmmmm.

Let me preface everything I say by echoing the wise words of . It is

trial and error. There are no hard and fast answers. Every LBD sufferer is

unique and no two patients have identical reactions - they are all acutely

sensitive to every drug but the side effects manifest in different ways. Some do

much better than others.

My dad died 21st Oct last year. We estimate he had the disease for about 7 - 9

years but only severely in the last 2-3 years. My dad did better on Olanzipine

than Quetiapine. Sadly for him the Quetiapine exacerbated his Parkinsonism very

quickly. His mobility was drastically impaired and his tremor worsened

significantly. He became much more rigid, fell over more, had serious low blood

pressure, constipation, sweats and was generally more agitated. The

hallucinations did ease up for a time but slowly returned hence the need to

increase the dose of Quetiapine which triggered more debilitating Parkinson's

symptoms. The 'experts' attempted to moderate the effects of the Quetiapine by

giving my dad Madopar (Levadopa) for Parkinson's.

This was hell. These two drugs conflict and act against one another so it was

impossible to 'balance' the two.

My advice is take it SLOWLY and watch like a hawk!

Keep a detailed diary - note down times of dose, amount given, with food or not,

reactions and behaviour. Monitor it VERY closely. These are extremely powerful

drugs and NOT specific for LBD. They are drugs that have been developed for the

treatment of Schizophrenia and other psychotic illnesses. It's all a bit of an

experiment.

If you are not happy then challenge the 'expert' opinion.

You know your loved one better than anyone else and often our gut feelings

should be listened to.

I'm so sorry there are no easy answers . But please ask here about

ANYTHING. Personally I am not a fan of Quetiapine. I have grave reservations

about its suitability for LBD but let's face it, what else is there?!

Has anyone spoken to you about Rivastigmine? My dad was helped by this drug

('Exelon') - it helped with comprehension and reasoning. As far as I know, I

haven't heard that it has serious side effects. It is an Alzheimer's drug and

helps lessen confusion and muddle.

Keep probing - we are all behind you!

Take care

Sally (in the UK)