1. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Hello everyone

    It's been quite some time since I've been on the site. Things haven't got any better and Mum's doctor has changed her to Quetiapine this week.

    I would be really grateful to have your feedback on whether this has good or bad thoughts by you all.

    Thank you.

    Ellie
     
  2. judyjudy

    judyjudy Registered User

    Mar 19, 2008
    32
    west sussex
    Hi there
    Ma has been on this for 3 weeks now and it has certainly calmed her physical activity down but has not sedated her during the day. I suppose it is too soon to tell really but so far so good and no side effects. She is on 50mg at 8am and at 8pm.
    Good luck
    Judy
     
  3. CYN

    CYN Registered User

    Jan 4, 2008
    702
    east sussex
    Dear Ellie,

    When my husband was put on quetiapine i looked it up on the net and i did not like what i read . When i told his hospital doctor he told me it was an ok drug for my husband, i am still dubios to this day he was not particularly disturbed ,vas Dem, and i think it was a chemical cosh.

    Cynthia
     
  4. ishard

    ishard Registered User

    Jul 10, 2007
    98
    I too did a lot of research on this med when my mother was first prescribed it as I used to be a research nurse before I 'retired' to look after mum, so it was easy for me to research.

    This med at first glance when googling it says it isnt suitable for people with vas dems but please search further as there has been studies done that PROVE it helps with behavioural issues.

    Mum is on 25mg twice per day and is absolutely fine on it, no agression, verbal or physical, and so much less worrying by my mum.
    I know that it sometimes shortens life when used with dementia but dementia shortens life too.

    Quality of life is much much, more important than quantity isnt it?
     
  5. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Ellie,

    This is just my experience and I really do believe every case is different. I do think as carers we need to make difficult choices with medication sometimes. Quetiapine is proven to help with behavioural problems and to reduce aggitation.

    Dad was on quetiapine for over a year. It is a long story, but although he needed something for the aggitation at the time I had a lot of trouble convincing one GP that the medication should be reviewed. He was on 25mg twice daily.

    When it was finally reviewed (in his new home), he was taken off quetiapine and he is now much more aware and alert. Basically in dad's particular case he had been on the quetiapine for way too long. It served a purpose at the time.

    I do not regret dad having the drug as there was little else we could do at the time, what I regret is not forcing the doctor to review the medication sooner and at least try taking dad off it for a short period. We live and learn.

    The hardest thing is knowing what side effects are related to dementia and what side effect the drug is causing. While on quetiapine he had very dry lips all the time, he was a lot more twitchy than he is now and he seemed to have regular stomac pains. I also see him with his eyes open a lot more of the time now. Those are my main observations. Not exactly a clinical trial as I really did not know what to look for at the time. Just things to perhaps keep an eye on, but the GP and home should also look out for any problems .

    Again, this is just my dad's story, many others have different experiences as you will pick up from this thread.

    Kind Regards
    Craig
     
  6. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    My father was prescribed Quitiapine (originally Olanzapine as a short term measure by the GP, this was changed to Quitiapine by the consultant). My father's paranoid suspiscions and obsessions about our neighbours had reached an intolerable level and were making life impossible. He was also starting to become very aggresive.

    The dosage was increased a while ago, because the old paranoia had started up again. He is now on 5x25mg at night and 4x25mg at night.

    When we started the drug was quite sedating but this quickly wore off. We have noticed no other unwelcome side-effects.

    Without the drug I am quite sure that he would have eventually ended up being sectioned and then placed in a secure EMI unit. And would probably have driven either my mother or myself - possibly both - into nervous breakdowns by then.

    The drug may carry risks and may be prescribed inapproriately. However, there are situations such as ours in which it is justified, and the benefits far outweigh any risks.
     
  7. Lotti

    Lotti Registered User

    Jul 31, 2007
    52
    My experience was the same as Nebiroth, it did sedate mum initially but now she is wide awake and 'with it'. Without it she was quite delusional.

    Regards
    Lotti
     
  8. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Thank you for your responses...........

    I'm going to print these off and digest after work.

    Mum is in an emi secure unit and has always had episodes of aggressive behaviour at times (primarily because she wants to get out! Don't blame her!!!). She's been very very sleepy in the last few months. Dr has changed medication to hopefully assist agitation/aggression and to improve on level of sedation!

    I'll read, search internet for info and then, if not happy, talk to GP .

    Thanks again.

    BE HAPPY!!

    Ellie
     
  9. mackerel boats

    mackerel boats Registered User

    Mar 29, 2008
    18
    west country
    Bad reaction

    It is very interesting to read the replies you have received.
    As has been said everyone is different and my husband's reaction seems to be so different to many others. He had bad side effects to Lamictal. He had a nose bleed, feverishness and shivering and was sleeping most of the time. The Doctor originally thought he had picked something up when we were on holiday, but to cut a long story short it turned out to be the Lamictal.
    He was then prescribed Quitiapine (the smallest dose, I believe it was 25g). He took one tablet at 10p.m. and the next morning he was so groggy he refused to take another tablet. I agreed with him. We weren't going to have him so poorly for another 4 weeks after all he had gone through with Lamictal. Both tablets were prescribed by the Physchiatrist for his agressiveness and mood swings.
    I now put gingko biloba drops in his tea 3 times a day and I do think they have helped.
    I do wonder if sometimes we are being used as "guines pigs".
    I would suggest that if you have any concerns with your Mum's medication please air them to your Doctor/Physchiatrist.
    Take care.
     
  10. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    My husband was put on Quitiapine when i had him at home. He was put on the smallist dose and only once a day in the morning. Will i was not sure about giving him it at all. I did and it knocked him for six he also went very pale. It made him as though he was very drunk. I got told to keep on giving him it, i didn't a week later i got told he was doing a lot better. They thought he was on it and he wasn't!At the time he was no problem during the day but in the evening was when he got sundowning and the problems started giving him it first thing in the morning didnt help at all. When he got taken into hospital they gave him it again it wasn't long before they had to take him off it again and that was the smallest dose they could give. I too have heard gingko biloba can help a lot.
     
  11. knackered

    knackered Registered User

    Apr 8, 2008
    21
    Sussex
    EllieS

    the first thing to say is that everyone is different so please bear this in mind when you read below.

    My mother was put on quetiapine at the smallest dose poss: half a tablet, 12.5mg.

    She had that for 3 weeks with no obvious improvement re her delusions etc. Probably because it was too low to act therapeutically!

    But as she became rather dizzy and unstable, the GP has taken her off it for 2wks while we assess how she is now, and whether the dizziness goes. It did- almost immediately.

    I am still 'making observations' before gettng back to him re what to do next. But my feeling is she will not be able to resume taking it, let alone having a dose which might help her delusions.

    From the literature that comes with it, it seems that quetiapine can actually be taken at much higher doses than my mother's if it is well tolerated.

    From doing some searching about it, it seems that it is quite a 'good' one in comparison with some other anti-psychotic drugs, so worth sticking with if all seems OK!

    Good luck, I hope it suits your mum.

    knackered
     
  12. thehoggers

    thehoggers Registered User

    Mar 24, 2008
    5
    seroquel/quetiapine

    In Canada the name is Seroquel, my sister (44 and Down's) was on Seroquel for sleeping, the highest dose she was at was 75mg at bedtime, but it made her very dizzy, brought down to 25mg at bedtime and it helped her sleep very well. She weaned off of it in August 2007 very slowly, had some withdrawal effects from it.

    She is now on another antipsychotic risperidone, and it seems to have worked better for her, in terms of fears and paranoia. The Seroquel never really helped with that.

    There are so many combinations of meds, it's so hard to know what is caused by the meds, and what by the dementia. I agree though that Drs. aren't always the experts, but they need to learn from us. So anytime we've noticed these issues with meds, we make the dr. aware so he can keep in mind for someone else I hope.

    Good luck
    Deb
     
  13. ishard

    ishard Registered User

    Jul 10, 2007
    98
    I dont know if anyone knows but Serequel can drop blood pressure which may account for the dizzynes and sudden paleness of the face in some people.
     
  14. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    Seroquel is one of the "brand names" for Quitiapine. It often appears under the name Seroquel in the Uk too.

    It may appear that patients are "guinea pigs" but unfortunately the individual response to these drugs varies so widely that really the only way to go is to "try it and see". I am sure that doctors find this as problematic as do the patients. Another problem is that whilst side-effects (like sedation) may appear quite quickly, benefits can take some time, and may be gradual enough that those around the patient all the time don't really notice improvements. These factors can encourage people to stop the treatment because it doesn't appear to be working - the treatment is abandoned before the side-effects get a chance to subside and the benefits to appear.

    So what benefits one person may not work for another, what causes side-effects in one does not in someone else..etc etc.

    This means that the path to a sucessful treatment is a long and tortuous one, and very frsuatrating for all concerned.

    We were lucky in that my father responded quite well to Quitiapine. As I said earlier, without it I am quite sure that he would have ended up being sectioned.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.