1. hope2help

    hope2help Registered User

    Sep 10, 2007
    3
    northwest
    can anyone tell me if exelon can be withdrawn by the nhs even if the carer considers it is making a difference? My F-i-law is afraid that my M-i-law will deteriorate further once its withdrawn, is there any other medication that may help during the moderate/severe stages? Is exiba an option? Also I think my M-i-law is suffering with varing constipation/incontinence (I think probably due to overflow) but my F-i-law is reluctant to give her medication or seek help in case they withdraw the exelon. Anyone any idea cost of exelon privately?
     
  2. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    AFAIK is someone is already receiving Exelon then they will not be affected by the new NICE guidelines which I suspect is the source of your FIL's worries?

    The new rules only affect newly diagnosed patients. They should not withdraw Exelon simply because of the decision by NICE.

    As I understand it, Ebixa has been withdrawn entirely from NHS provision.

    But - it is also possible that it can be prescribed if a doctor/consultant considers there is a clinical need, but they may have to justify it to their Primary Care Trust.

    It is possible that Exelon could be withdrawn if the prescriber believes that it is no longer of any clinical benefit.

    As ever, there is apparently no concrete set of rules, so much depends on your GP/consultant/Primary Care Trusts as they all seem to have different policies.
     
  3. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    My husband is being taken off Exelon this week. I got a phone call from the hospital to ask if it is ok if they take him off it as its doing him no good due to his deterioration. I will let you know if it has any effects on him coming off it. They aren't giving him anything in its place.
     
  4. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    My husband is on Ebixa due for review next week. He was taken off Aricept ( he had a good response to it) after three years due to low pulse rate then tried on both Reminyl and Exelon and they had the same effect.

    The Memory Service arranged for my GP to prescribe Ebixa with a review after three months, will be interesting to see what happens next week.

    Linda x
     
  5. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    My Dad was prescribed Ebixa in December 2006, just after the NICE guidelines came out. Aricept was considered unsuitable due to an irregular heart beat. Although the consultant who prescibed it is private (long story) he receives Ebixa on the NHS without any problem. I know this is not always the case, depending on where you live.
     
  6. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    We were told back in june that my Mum was in the mild to moderate stages of AD and was prescribed Aricept about 2 weeks later, now after only a short time the AD has progressed to Moderate/servere stages of the illness and has been taken off the Aricept and is no longer receiving anything apart from a calming drug and sleeping pill. We were not told by the hospital that the illness had progressed, since she was taken off the aricept her mood has changed, she is restless and not talking directly to you very much, more to herself. The doctor has now said that he thinks she might have Vascular dementia and AD but will not do any more CT scans to find out what is going on in her brain.

    When you are in the moderate to severe stages of the illness is there any other AD drug that might help?


    LaylaBud
     
  7. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi hope2help,

    As a person who is taking Exelon, I was told from the time I started to take it, that once it was obvious that the medication was not doing the job its meant to do, it would be withdrawn.

    I also think that this is in the guide lines which are given to other patients I have met, who are taking it.

    Although this mediaction has been brilliant to me, I am a bit worried about the time when I am told to stop using it, but as I said before that is what I was told in the beginning and I have to accept it.

    Best Wishes

    Ken
     
  8. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Hi Ken


    May i wish you well and this drug is helpful to you for many years to come.


    Layla Bud
     
  9. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    My husband got taken off Exelon yesterday he is being monitored for any effects. Its early days though. Will keep you informed.
     
  10. hope2help

    hope2help Registered User

    Sep 10, 2007
    3
    northwest
    thanks 2 all offering advice, M-i-laws consultant review is in december so I'm hoping to find out how they make their assessment on why they withdrawing exelon - as they only see her at most 3 times a year and currently my inlaws have no other assistence or home help.
    Chip- thanks for post, hope ur hubby doesn't suffer any withdrawal problems, will keep looking for ur updates.
    Thanks 2 all for kind regards about my twins, they're a ray of sunshine to my family.
     
  11. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    My mum is slowly coming off Exelon. To be honest, the only change I've noticed is that she seems less 'edgy'. Also, that I think her stomach is less upset. She has been on it for 12 months and is early stages. The reduction in dosage started about 3 months ago.
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi all,

    I am relatively new to all this. I don't know what these drugs are, and what they are prescribed for.

    Mum went in a psychiatric unit in June, and after tests, was prescribed Aricept. After about 3 weeks, the consultant said it was showing no effects (though she had told me the effects took up to six months to materialise). She has since gone into a care home, and I have no idea if she is still on Aricept, whether she should be, or what any of these other drugs mentioned on this site do.

    Can somebody advise me?

    Love

    Margaret
     
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Mum is in a care home too, but we are kept fully informed of all the changes in medication. Have a word with the home your Mum is in and get an update on what drugs she is on and why.

    Mum was on galantamine which was stopped and her deterioration escalated alarmingly over the next couple of months and then levelled off.

    Since then the deterioration has been slow but steady. Each sufferer's reaction to withdrawal is different and that is another aspect of this disease that makes it so hard to deal with.

    Kathleen
     
  14. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Margaret:
    I think I understand the N.Derbyshire Mental Health Team and where they are with policy on medication - I will email privately as I need to mention names etc. and prefer not to do it on the public site.

    I am fairly certain that Aricept is prescribed in our area for confirmed Alz., even following the NICE decision. One of my neighbours started it within the last 6 mths! It can only be used after careful medical checks and only for Alz. (not Vasc.Dementia).

    Laylabud: my husband is on Aricept and it has been suggested that when this no longer helps I should perhaps consider Ebixa (but would probably need to buy it privately).

    I personally have no knowledge of Exelon and Reminyl and asfaik it is not routinely prescribed in our area. (Must now find out more about that).

    Posts on medication are useful because of the varying views of both the individuals and the experts within the mental health field.

    Best wishes all Beckyjan
     
  15. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    AFAIK Aricept is only licensed for use with Alzheimer's Disease. It is therefore not prescribed to people who have other dementias, such as Vascular, although it can be used if there is mixed dementia with an Alzheimer's component.

    I believe that Aricept is the drug of first choice within it's class, in that they (Aricept, Exelon and Reminyl) have the same basic way of operating, but Aricept is the one that is least likely to cause side-effects.

    My dad began on Aricept, and responded well to it, but was switched to Exelon, because it is considered to be more helpful with people who have psychotic symptoms associated with their dementia.

    We were warned at the time, that Exelon has a far bigger "reputation" for more commonly causing the side-effects associated with these drugs, and that if side-effects occur they are likely to be more severe as well.

    Certainly, dad's Exelon was titrated far more cautiously than the Aricept was.

    Of course, much depends on the experiences and opinion of the prescriber, but it is my understanding that Aricept is normally the first to be tried, the others are more for a "fall back on" treatment.
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #16 Margarita, Sep 15, 2007
    Last edited: Sep 15, 2007
    My mother is on Exbixa before the new NICE ruling , never given any medication for AZ , but Exbixa .

    My doctor said that it would be inhuman to take mum of the medication even if they thought if was not working , but then I was told when if she went into care home it would be another story medication can be taken away if they think its not working, would have to get the back up of my doctor to still give it to her in care home . then if our doctor did not support me would have to get it privately if she was in care home .

    Mum been on it for 5 half years now , still going strong, but I can see little changes that its slowing down in working

    Can inmagine being taken of a medication like Exelon not given another medication like exbixa , they would be a drop and only exbixa [if it work for the person ] would pick them up .
     
  17. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hi Nebiroth

    We were not given the option of Aricept. It was Exelon because of mum's chest/heart problems; Aricept being deemed unsuitable. However, I know we have had a similar discussion on here before where some people said they were prescribed Aricept even when there were those problems. I think it's a lottery based on cost in a lot of cases!
     
  18. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Well no side effects yet with him coming off Exelon. But he still jerks they say they don't think they will be able to control them. He also isn't speaking now. I also have my Dad in hospital this week so things are hectic.
     
  19. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Well he had his assessment yesterday at the Memory Clinic and MMSE score down to 9. The CPN is going to speak to the consultant and he will decide whether to continue with Ebixa. I should hear his decision tomorrow.

    Linda x
     
  20. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Linda, did you feel that Ebixa was doing anything to help your husband? If so, you should fight to keep him on it, it's worth a try.

    It didn't have any effect on John at all, and they asked me in hospital if they could take him off it, and I agreed. He's still on Reminyl though, because that certainly helped him. I'm not sure if it's still working, but they wouldn't withdraw them both at the same time anyway. John can't do the mmse because he has no language.

    Make sure you let them know what you want.

    Love,
     

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