Withdrawal of Reminyl

Discussion in 'ARCHIVE FORUM: Support discussions' started by Steph, Jul 13, 2007.

  1. Steph

    Steph Registered User

    Jul 13, 2007
    9
    Hello

    I've regularly referred to this forum over the past four years and found it absolutely invaluable, I'm just starting to engage with the so-called "system" and now need to make my first post!

    My mum, who is 76 and as fit as a fiddle physically, has been attending a memory clinic and taking reminyl for about four years. During that time activities like walking and ballroom dancing have taken away some of the restlessness and hyperactivity that this condition has caused her, but lately we have moved into a new realm of tears , panics, suspicion - mostly directed at my Dad. The pair have been married for 57 years and inseparable so its heartbreaking for him. I live 130 miles away so am trying to help out as best I can by long distance.

    Mum now leaves the house about 15 times a day and comes back sometimes as if she's been for a nice walk, other times as if she's been running away from something - when you ask her she has said that she is looking for a bus to throw herself under. My dad has tried locking the door to keep her in but that sends her into a major panic.

    A few weeks ago Mum made a midnight escape through the toilet window to "get away from him" and then two weeks later tried to do the same through the kitchen window, falling on my 80 year old dad, who is nothing like as fit as a fiddle and putting him in hospital.

    In the last 3 weeks the medics have prescribed Seroquel, stopped her Reminyl on the basis that it may be providing her with an insight into her condition which she finds unbearable, hence the agitation, panic, wanderings and tears. They have now stopped the Seroquel which didn't seem to be doing anything and prescribed Serenace which they are now increasing.

    They have also offered a day a week at the day hospital to give my dad a break but told us that she cries in the car all the way there.

    I have asked for a meeting with the consultant, which the CPN tells me today I won't get - can that be right?? They have also agreed to a family meeting week after next with the doctor, social worker, CPN.

    Does anyone have any advice, firstly about the medication - is stopping the reminyl a good idea for instance? Secondly how do we get this "system" to work for us - what do we have a right to expect from them?

    Thanks
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Steph

    I'm glad you've decided to post, I'm sure you'll find lots of support here. I know from other members how hard it is trying to keep on top of the situation when you live at a distance.

    My husband John is on Reminyl, and has been for seven years. He now has Ebixa as well. Our consultant hasn't suggested stopping it yet, although I'm sure the time will come.

    According to NICE guidelines, it (like Aricept and Exelon) are only to be prescribed in the moderate stages of the disease, so presumably your he considers your mum to have gone beyond that stage now.

    I have no experience of the other drugs, but I'm sure others will.

    Regarding the appointment with the consultant, I imagine that is because you are not next of kin. Perhaps your father could request a meeting and you could go with him?

    Alternatively, the family meeting sounds like a good idea, presumably you will be able to be there? You should be able to find out more about the medication.

    The next priority at the meeting is to find what help SS are prepared to offer. Be ready with a list of what you think is needed if your mum is to stay at home, and what the alternatives are.

    The only way to beat the system is to know exactly what you want, and insist, politely but firmly. If that doesn't work, yell and scream. It's very much the case of the squeaking gate.

    Let us know how you get on,
     
  3. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    From what you have said, they seem to be saying that the Reminyl is working, but that because of this mum has insight into her condition - and that without it, her consequent loss of cognitive function would mean that she would no longer have this insight. I take this to mean that a "deterioration" in her case, of one facet of the condition, might actually be beneficial! Which sounds paradoxical - but I think I can see their logic. If mum becomes more unaware of things then it might do away with the agitation and anxiety.

    As far as I know, the NICE guidelines don't have any effect on someone who is already receiving Reminyl (or Aricept, Exelon and Ebixa). In that case they would be withdrawn only when the clinical conditions indicate such withdrawal. Usually this is when the drug is thought to be providing no benefit, or when the benefit is outweighed by other factors.

    It is only newly-diagnosed patients that fall under the new guidelines, and as you say it is then only prescribed in the moderate stage (or in the case of Ebixa, not at all).

    As Skye says, mum's husband will be regarded as next of kin, so it is likely that any decisions or discussions about treatment etc would be referred to him in the first instance. Children, unless they are living with and acting as main carer for, tend to fall lower on the ladder than spouse I think. Why not ask Dad to request a meeting with the psychiatrist and at the same time request that you be present?

    I live with my parents, and act as carer, so all meetings at whatever level have always been with both myself and Mum - so we both have a voice when it comes to Dad. But I;m sure that in a conflict of views, Mum's wishes would over-ride mine.

    As Skye has said make a list of everything before you meet with Social Services etc, because it's easy to forget in these meetings. It sounds as though you need to highlight the risk to Dad's health and wellbeing.
     
  4. Steph

    Steph Registered User

    Jul 13, 2007
    9
    Thanks

    Thanks Both very much.
    I've written to the consultant on behalf of my dad, so hopefully will hear from him early next week and then we can both meet with him. The thing that concerns me is that they are swapping and changing the medication as if they are ordering a pizza takeaway with absolutely no explanation of advice. It seems like they treat the carer as if they have dementia as well! My dad gets the telephone call from the CPN - "stop reminyl start Seroquel, no stop Seroquel lets give Serenace a try "with no explanation about what they're trying to do and the effects that it may have in terms of benefit of side effects. The only advice or information we've had freely from day one has been this web-site - everything else we've had to dig for.

    So thanks to everyone for the benefit of their experience and knowledge - it really does make a difference!
     
  5. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Steph

    This must be so very difficult for you all.

    I feel you and your dad have every right to question the changes in medication, you dont mention what sort of trial they have given each change, the monitoring process after each change, and what medic is doing the monitoring.

    I would most certainly ask for an appointment with your dad to see the Consultant to discuss your options.

    Keep in touch.

    Love

    Cate xxx
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Steph,

    I agree with Cate. I would ask the consultant for an appointment for you and your dad, to explain his advice. it doesn`t seem right that changes in medication are arranged by phone without any discussion at all.

    At my request, my husband`s consultant agreed on an appointment with our son. This was to enable our son to understand his dad`s condition, and discuss possible medication.

    If your dad agreed, it might help if you saw the consultant so you could explain the stress your dad is under.
     
  7. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Novice

    Gee, what a situation, I just hope you can cope with it and get it sorted. I can't offer any advice, don't know any of those drugs, never been in that situation, and hope I never am.

    Much love to you, and stay strong.

    Margaret
     

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