Query? Deterioration.

Discussion in 'ARCHIVE FORUM: Support discussions' started by jan., Mar 31, 2007.

  1. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    I was just wondering if anyone out there has noticed a deterioration in their loved ones A.D. since commencing medication. My father was on Aricept but it upset his bowels, he was then prescribed Reminyl, that did the same. He is now on Exelon, which suits him better BUT after a month on this particular medication his forgetfulness, confusion and agitation seemed to have been enhanced. It has led me to wonder whether his initial diagnosis was flawed(although he did have blood tests, scans etc,etc.) I feel very confused about it all and worried that maybe i`m making matters worse for him by giving him this medication in the first place. I`d be happy to hear if anyone else has had any similar experiences.

    Thanks for reading this,
    Best wishes to all,
    Jan.
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Jan

    Sorry you're having problems with your dad's medication. John was put on Reminyl from day 1 and hasn't had any problems with it.

    But some people cannot tolerate any of the three AD drugs. If I were you I would ask for an appointment with the consultant and discuss these side-effects. It might be better for him to have Ebixa, which seems to agree with most people.

    Hope you get it sorted out.

    Love,
     
  3. hawaii50

    hawaii50 Registered User

    Hi
    My mum had all three drugs when initially diagnosed. She had side effects with all of them and after 9 months we decided it just wasn't worth it as we hadn't seen any positive efects. She has been without medication for more than two years now and we never regretted taking her off the medication. The downside was that the mental health people no longer had an interest in dropping in to see her as their purpose was to monitor her while on medication. Their support was good during the 9 months on the drugs so we really missed their visits!

    It is worth trying them all though and one of them might work and slow down the disease for a period of time - we were told they only slowed it down by about a year - if it slowed it down for much longer we would probably have stuck it out but the side effects in our case outweighed the benefits.
     
  4. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    Hi Hazel,
    Correct me if i`m wrong, but isn`t Ebixa only prescribed for later stages of A.D? Dad is in the moderate stages (questionable) I was also told ( by cpn ) that this is the last chance drug for him!! I think i`ve a lot of questions to ask when i take dad to see the consultant in April, maybe Ebixa will be prescribed. I suppose it could just be a "natural" deterioration in dad, which can sometimes be hard to detect, due to the fact that dad lives with us and we don`t always notice the little changes building up.

    Thanks Hazel,
    Jan. :)
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Jan

    Yes, Ebixa is for late stage, but it is sometimes prescribed earlier if the other three don't work. John has it now as well as Reminyl, but only because I kicked up a fuss. I don't think he's late stage.

    If you push hard enough you can generally get a prescription. I actually said I was prepared to pay for it, and the consultant then agreed ot prescribe it on the NHS.

    Love,
     
  6. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    Hi Hawaii50,

    I`m thinking along the same lines, although i want to give dad as much of a chance as possible, but i won`t see him get worse for the sake of medication. I`ll be speaking with his consultant in April, so i think i`ll be making a list of questions for him (otherwise i forget :eek: )
     
  7. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.

    In which case, i`m going to have to learn (quickly) to be more assertive :eek: I can only ask!! :eek:
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    I think the drug situation is the luck of the draw.

    Neither Reminyl nor Aricept agreed with my husband and his consultant said he wouldn`t want to try Ebixa as he felt he`d have a similar reaction.

    I too was told the drugs would only give a year or so of a better quality of life, but there are those for whom the benefits have lasted much longer.

    I suppose this is why there is so much interest in monitoring.
     
  9. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    Thanks Sylvia,
    I suppose we are all so determined to find "something" that works,simply because we`re afraid of whats to come. I just hope that dad will "settle" down, and the Exelon WILL work although i don`t hold out much hope now. I put my query forward as i`ve never read (as yet) of anyones medication NOT working for them, so i assumed that dad had probably got a different form of dementia, had been diagnosed incorrectly and had been prescribed the wrong drugs. We live and learn don`t we.

    Love Jan. :)
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Dear Jan,

    When my husband was prescribed Reminyl, after the initial shock of realizing what the drug was for, we were so grateful.

    Within days, he experienced the most dramatic hallucinations, seeing people, hearing voices, feeling threatened; he was terrified. We persevered hoping they would go, but instead of improving, they got even more scary.

    He was then tried on Aricept, but experienced the same side effects, almost instantly.

    It`s awful, because that was 2 years ago, and since then he repeatedly asks if he can try them again, because he is so desperate for help. But the consultant has refused, saying it`s too risky.

    It puts me in a difficult position, because it sounds, to him, that I know there is a drug for Alzheimers, but won`t let him have it.

    With love
     
  11. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Well we've noticed considerable deterioration since my Dad was switched from Aricept to Exelon (the switch becuase apparently Exelon is better for those with "psychotic" symptoms).

    However, you have not said what dose of Exelon your father is on. Of the three drugs I believe that this is the one where the dosage is built up the slowest (this is called "titration" I think), because Exelon has the biggest chance of side-effects. The faster the dose is ramped up the bigger this risk. Therefore with Exelon it is usual to "start low, go slow".

    With Aricept Dad was started on a half-dose for a month, then onto a full dose.

    But with Exelon, he started on a quarter dose, for two weeks, then add a bit, go two weeks, then add a bit, and so on. Six weeks later we are still only just above half of the maximum. The deterioration might be going from full Aricept to what is effectively half Exelon.

    Also, sad to say, not everyone shows improvements from these drugs. It can also take a while for benefits (if any) to appear. A benefit might simply take the form of a slowing in the decline which you wouldn't tend to notice.

    Because patients with AD naturally decline it is difficult to tell whether its from normal progression or from a drug. Usually the only way to tell is to stop it which f course should only be done in consultation with the doctors!
     
  12. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    Hi Sylvia/ Nebiroth,
    Thanks for your replies. Dad seems to be getting worse..... he seems to have taken a backward step, in that he seems to be more introvert and just standing and staring into space more than usual, his sundowning has increased fourfold, and his intense dislike of my husband has really put pressure on the family, he gets verbally abusive towards him and very sarcastic with his comments. If i ask him to refrain from it, he does it even more, which then causes even more tension.

    He was on Aricept, then Reminyl 8mgs and now Exelon 1.5 mgs, i will have to order some more soon, but am unsure whether he should continue, i thought dads appointment was in April, but he doesn`t see the consultant until May 18th. I`m hoping that by then things would have settled down, but i can`t see that happening at the moment.

    Dads Exelon has not been increased, but this is only the first course of this particular medication. Perhaps when i request more, they will increase it, therefore relieving some of regression. I hope so.

    Thankyou for your support,
    Jan. X
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hi Jan,
    If you`re really worried about your dad, why don`t you see if you can bring his appointment forwards, or ask advice from the consultant. May 18th. is a long time to wait.
     
  14. jan.

    jan. Registered User

    Apr 19, 2006
    405
    Cheshire, UK.
    Thanks, will probably do that Sylvia, i`ll get my hubby to phone tomorrow( i have a phone phobia :eek: ) to see if an earlier appt. is available.

    Love, Jan. X :)
     
  15. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    39
    Staffordshire
    Hi Jan

    My mum was on Reminyl until last July. When we took her to see the consultant at the hospital he said she would have to come off them as they weren't working. I kicked up a fuss and practically begged him to try her on Ebixa. He said they might not work, I asked him how much to go private but he agreed to let her try them and gave them on the NHS. Mum has been on them for nine months now and she has got so bad that tomorrow she is to be admitted into a secure hospital. I thought Ebixa would really help to hold AD at a moderate level, perhaps they might if they are given early on in the illness.
    One of the psychiatric nurses told me to kick up a fuss, she said the quiet ones get nothing but if you make a noise you will get all the help you need. So if you are someone who trusts others to do the best for you as you would for them , forget it.
    MAKE A NOISE and let them see that you need the best for your dad.
    I wish you well with your dad.
    Take Care
    Suptowngirl.
     

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