1. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Does anyone know much about this drug, Ebixa? David's consultant said it was available but if we wanted it we had to pay privately! From TP I suspect this is not the case in all districts. I would probably be prepared to hassle and make a fuss for NHS funding for it if I knew it was worthwhile. The consultant did not actually say whether she felt it was right for my husband or not. She seemed to have a fixation about us going privately (it is because I chased for a 6 monthly assessment after 7 months and then had to chase for a follow up about increasing Aricept). She mentioned BUPA care homes and a private consultation - but obviously not aware that BUPA do not deal with physchiatric problems!!

    We have an excellent GP and we need to see him next week - I would like to be a little prepared about this drug before we go. (Any comments would be useful[/B]]Also - does anyone know about fluid retention and whether the aricept and other drugs cause this. David has put on over 3 stones in 12 months and although he eats ok he does not eat that much. On the last visit to GP he seemed unconcerned but I feel I need to get more answers on this one. (Decreased mobility seems to come with the weight gain).

    Hope someone has help on these points for me. :confused:

    Thanks BeckyJan
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi BeckyJan, I think some of the weight gain comes with decreased mobility.
    Lionel's mobility is so, so bad now, comsequently his weight has gone up.
    Two years ago he was still walking 3-4 miles every day.

    Don't have first hand experience of Ebixa ( feel sure you will get some feedback soon though). A friend of mine did purchase the drug for his wife privately, and was delighted at the change in her. However the change only lasted 6 months, then she seemed to go downhill fast. But that is only one instance, and maybe she would have deteriated at that point anyway.

    Lionel has been on Exelon (rivastigmine) now for 4 years. Realise this drug cannot be working as well as it was, but I feel it gave us an extra couple of years quality time. Thinking of you and David, Connie
     
  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Thanks Connie - do not know about Exelon - do you get this privately and at what stage did Lionel need it (did he start with Aricept which seems to be the normal in this area). I think David is progressing rapidly from Stage 5 to 6 although some days are more positive than others. It just seems the disorientation phases are happening more often. Eg yesterday we cleared breakfast, I left him to wash up and when I appeared 20 mins later he had set breakfast again!! We went out for lunch with daughter and husband - all morning he had to be reminded and half an hour after they had left he had forgotton both the meal out and who we had been with. (Had also completly forgotten NY Eve celebration with a few friends and family). Now asks frequently who is dead and who is alive. 'Where is my Dad' - he died 30 yrs go!

    I am just not sure whether I should be pressing for more or change in drugs. Unfotunately it seems the responsibility of the carer to take this on board - why do our medics not take it on?
    Sorry to ramble - do value your help. BeckyJan :confused:
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi BeckyJan, I think Exelon is very similar to Aricept, and the third one in general use. Lionel went on this 4 years ago, but we were told it was only really effective for 18/24 months.(NHS supplied)

    This week has been a nightmare, Lionel has lost most of his mobility after a fall last Thursday, although seems a tad better this evening. His memory is shot to pieces, sounds very like your David in that respect.

    He went through an aggressive stage about 2/3 years ago, and then became accepting and quite calm. Aggression back with a vengance at present I can understand the cause, but it is still not always easy to walk away from.
    Take care, Connie
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi folks

    I moved this thread from the "About Talking Point Members" section to here as it should have a larger audience here.

    Bruce
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Bruce - thanks - it did go through my mind that I should put a message on the general posting but you have sorted it BeckyJan

    Connie: sounds a bit rough for you! David went through the aggressive bit at the very beginning before I knew what was going on - I remember it well as it was the first time we ever had arguments - mainly to do with me going out too much (which was not true although at the time I felt like being out much more).

    Equally he then went through a very calm and understanding phase- fully understanding my position as his 'carer'.
    When people say it is you not him that is suffering I feel like arguing a little as they do not seem to appreciate that he has not fallen off the edge just like that. Unfortunately he understands exactly what is going on (maybe not realising how bad he is) - and that hurts him dreadfully.

    Now he fluctuates between one mood and another. The past two days he has been putting up his calendar - we now have a massive hole in the study wall - and he keeps drilling!!!!! (For someone who was good at DIY it is very very sad).

    I hope to get more postings on the drug Ebixa and other comments as I really want to get to grips with David's medication. He is now on 10mg of Aricept and I do not think it is particularly helping him - very difficult to assess.

    Thanks for all your help as always BeckyJan :cool:
     
  7. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Hello BeckyJan

    My husband (now aged 62), with Alzheimers for 10 years or so, has been in an NHS Assessment unit for 2 years as he has multiple problems including aggression.

    Some 3 months after he was admitted there was a 3-monthly Care Policy Assessment meeting which I attended, and I asked the consultant whether he was considering prescribing Ebixa (Memantine). He knows that I try to keep up with developments in medication etc, and replied that he would have been very disappointed in me if I hadn't brought the subject up! (I'm one of those people who drive doctors mad!).

    He said that he was quite prepared to try it, although he said that our Health Authority had only recently agreed to fund it, and he and his colleagues had very little experience of it. He wanted to wait a little until he had got my husband's conditon as stable as possible with the other drugs (sedatives etc) that he was on, which seemed sensible.

    He did prescribe it a short while later, and my feeling and that of the staff was that it did help my husband to some extent, particularly in the area of communication and comprehension of what was going on. My husband's twin brother and I both felt that it improved his quality of life for a while.

    However, as I had been warned, after about 15 months it was pretty clear that my husband had started deteriorating significantly again, and after discussion with the consultant I agreed that the dose should gradually be reduced and then stopped if the reduction in dose caused no significant problems. The consultant assured me that if it led to obvious problems then he would go back to the full dose. This was about three months ago, and to be honest I don't think that stopping the Ebixa has had any noticeable effect.

    I have to say that one of my husband's other problems is severe back pain (he can't tell us but it is obvious from his movement and behaviour), which may be caused by "arthritic" changes in the spine (as seen on x-ray some time ago) or possibly by secondaries from a Ca Prostate (my husband has had a raised PSA count for some time, but it would be impossible to examine him under anaesthetic or by scan). He was started on Morphine Sulphate to control the pain just before he came off the Ebixa, and this has made him much more comfortable, but "knocked back" by the medication. I really don't think it is because he has come off the Ebixa - it is a different sort of unresponsiveness.

    The Consultant's aim is to keep my husband pain free and comfortable, and I really couldn't wish for better care for him than he is getting in this small NHS unit.

    With regard to cost: we live in Dorset, and the Health Authority was heavily criticised when it dragged its heels in allowing Aricept and the other early/mid stage Alzheimers drugs to be prescribed, so it seems (I hear from sources within the NHS) that the Authority was one of the first to allow Ebixa to be prescribed!

    Re fluid retention - my husband developed oedema in the lower legs and feet soon after being in the hospital - whether because of medication or lack of exercise I don't know, but he then knocked his leg (possibly kicking a rubbish bin!) and got an infection, which took months to clear up. It is now healed and the oedema has virtually disappeared. He was on Aricept for over a year before admission and this didn't cause oedema, and I don't connect the oedema with the Ebixa at all. No other water retention problems, but he has frequent urinary tract infections.

    I would kick up a stink before paying for Ebixa, although I know it takes energy that is probably in short supply. I think it is disgraceful that the Consultant immediately suggested that you go private, without even discussing whether the Ebixa would be effective or not. Other people may have better ideas, but I would write to the Chief Executive of your Health Authority and to your MP, but I know you would want to get things moving as fast as possible.

    I did have some doubt about Ebixa after a while - is it actually the kindest thing to do to prescribe it if it gives little improvement but prolongs the course of the disease? The answer to this probably depends on the quality of life that the sufferer is experiencing at the time. Not an easy thing to think about when it is someone you love, and you want the best for them.

    I do hope that your GP is more helpful and discusses the whole issue with you - he should know what the Health Authority policy is regarding prescription of Ebixa on the NHS - do ask him about it.

    Kindest regards

    Ruthie
     
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Ruthie: You really have understood my problem! Very interesting and it helps to motivate me to go further. (Yes I also have a reputation for 'fighting' doctors although our GP is a friend and I can let rip with him without him taking offence.).

    Funny you mentioned the backpain! David does have fibro myalgia so for any aches and pains we always blame that. However I have wondered whether the backpain was caused by anything else. Perhaps I have an underlying worry about the oedema and whether it is caused by heart or kidney problems! I suppose if that were the case the swelling with be in both legs.

    Anyway back to the drug problem - still not sure whether Ebixa will help David but you have given me some thoughts. Thanks BeckyJan :cool:
     
  9. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    BeckyJan hi,

    not sure how to compose this but...

    I started a very enthusiastic thread about Exiba a few months ago. My wife Monique was prescribed it as a new drug which would help her. I did some research - and unlike Aricept it has no effect in stopping the advance of AD. What it does for some patients is to make them more aware. Artificially give them greater cognitive awareness. Someone will correct me if I have got any of the medical facts wrong...

    The following is just my experience so far - it has no scientific background and the events may well have happened anyway so be careful in taking it all as god given fact please....

    At first I was thrilled with what Exiba did for Monique - she became a lot brighter, more aware of our world - seemed to be mentally better than she had been for months - Just wonderful.

    A little while later - maybe a month into taking it, she started to become very very depressed. The depression appeared to be triggered by the fact she started to become aware for the first time that her problem was mental - that she was actually ill - she became aware of all the things she could not do - laying a table - washing herself - Monique became a very sad bunny to the point I took her back to the GP who increased her dose of anti-depressants. I began to worry that Exiba was actually doing more harm than good - interesting moral dilemma. A drug which increases the mental awareness causing the patient to be more aware of their own inadequateness.

    Recently - the last couple of months or so - Monique has deteriorated very fast - the beginnings of incontinence - a major problem with imagined constipation - cannot remember she has been to the loo so she thinks she is constipated - all this after my administering stack of emnas and other cream, lotions and pills and nurses doing home visits to administer stronger emenas... So she was in hospital over Christmas having major tests and colon cleansing... Much to her distress - terrified to be in a strange place without me. Absolutely scared rigid.

    She is still on Exiba - We had a nurse come in to help her wash and clean her teeth this morning - will happen 3 times a week now. Monique was very aware that she was a sick person. Mentally sick - before Exiba she was blissfully unaware.... Not too bright but unaware... Now she is brighter and scared rigid - today she expressed the fear for the first time that she is loosing it. Will end up in a home- poor darling can hardly find her way around the house - it is quite big but now she needs reminding which room is which and what it is for....

    She is saddened she cannot lay the table even or wash up - now before Exiba it was like that but she did not worry about it..... she is now so clingy I can hardly go to the lavatory without her - She knows she cannot survive without me....

    OK I have gone on far to long - really sorry - It may well be that all these affects - symptoms would have materialised with or without Exiba - who knows? This is what it has been like in one case - would be interesting to hear from others but if I am honest - I would have chosen for Monique to have been less aware - more dull than this scary 'brightness' that brings out all her demons - poor darling.

    This will not help you Beckyanne and it has not made me stop giving her this medication but................

    love

    Michael
     
  10. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    135
    Germany/India
    #10 Stimpfig, Jan 2, 2006
    Last edited: Jan 2, 2006
    Hi BeckyJan

    There is a member called Jeanette from New Zealand on TP who was diagnosed with Dementia at 49. I always think of her and of others here who have not been posting for a long time but if you type her name in the search option, and subsequently look for her posts, you will find all her postings. In one of those, she had clearly stated that when she had stopped taking Ebixa for a while, her brain was so 'foggy' that she couldn't recognise one of her three daughters which shocked her so much that she went back to Ebixa and the fog cleared in a few days. I really hope she is well and will post one day.

    Meanwhile, I had actively followed all the threads on medication and it was really hard to come to any definite conclusion. Due to my special circumstances, I pay for all my mum's drugs and Ebixa, long term, means a considerable sum. I dilly-dallyed about giving mum Ebixa and started this just 3 days ago and kept wondering about Monique as I did so. Thank you, Michael, for that timely update. I can understand what it must be for you.

    Information on Ebixa clearly states that the drug will not cure or reverse AD but may improve cognitive functions in patients and that Ebixa should not be given to sufferers with kidney problems.

    BeckyJan, that's a good decision to inform yourself before seeing the doc.

    Take care
     
  11. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Dear BeckyJan,
    I asked the same question a couple of months ago.
    My husband (75) had been on Aricept for 5 years, and was coping reasonably well. At the end of August Aricept was withdrawn on the grounds of his 'slow pulse'. Within a week we witnessed the most incredible decline, within a month he was unable to comprehend anything we said, doubly incontinent, unable to co-ordinate his movements to get into or out of the car, hence more or less housebound, unable function......
    It was a nightmare, and I felt I needed to do something. I contacted the Consultant and asked again about Ebixa (I had already mentioned this when I was told we had to stop Aricept, but the reply then had been that it would be much easier and better if I tried Gingko Biloba). He said that only very few of his patients had responded to Ebixa, and that it would be expensive and 'not available on the NHS'. I said that my husband deserved at least a chance: he might, just might be one of the few who would benefit from it! One of the throwaway remarks from the Consultant was that "only the naive and the rich opted for Ebixa". That just made me nag even more - I am neither naive nor rich. I know there is no cure, but if there is something that gives us a little more time together, a little shred of 'normality' back, then it must be worth a try, and there is absolutely nothing I would rather spend my money on, since we actually have no other aim in life together any longer.
    We started on a very low dose of Ebixa on October 28th, and are now on 2 x 20 drops a day. It has not been a miracle cure, and we have good days/hours/moments as well as 'poor' ones, but my husband is now very often able to understand what we say, he can usually dress with a little help, he can climb the stairs again, and we are altogether more comfortable with the situation.
    He does have frequent restless periods, when he is compulsive about rubbing/cleaning things, and he also has tearful times, quite possibly for the reasons Michael has mentioned with Monique. A lot of the time is is calm and quiet, smiling and just watching/listening.
    It is impossible to know what is 'best' - personally, I prefer the ups and downs to the greyness of 'nothing and no response', but there is no way of telling how long the current situation will last, and we will have to 'go with the flow', as always.

    By the way: when I collected the prescription, I was prepared to pay the £100 or so per month that I was told it would cost, but when the pharmacist did not ask for any money I didn't offer - as I have not had a repeat prescription yet, I don't know whether it was just an oversight or perhaps the Consultant was testing my reaction when he told me how expensive it would be ......

    I don't know whether any of this has helped (I did find quite a lot of 'textbook' information on Ebixa on the internet), but I am thinking of you and send you best wishes. I know what a burden it is to have to try and 'help' someone who is unable to fend for himself! (And I also know how very much all these decisions and developments affect the lives of the main carer and the rest of the family - a fact which is hardly ever mentioned or considered by NICE .....).
     
  12. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    BeckyJan,

    I get the distinct impression that the efficacy of all these drugs is quite variable from person to person. It certainly seems worth inquiring of your GP and pushing on the system a bit to give the new drug (called Memantine here) a try.

    Just to add my experience from my mom's case: she was not able to tolerate either Aricept or Reminyl (both made her sick at her stomach), but was able to tolerate Exelon. (Those three are supposed to act in a similar manner.) On the Exelon, she continued to deteriorate. That prompted her HMO (health maintenance organization, with some of the same cost constraints as your NHS) to prescribe and pay for Memantine at the same time as the Exelon. She continued to deteriorate. Would she have gotten worse faster without the drugs? Maybe.

    When Mom went into the Alzheimer's home (after a few weeks of lots of confusion including short stays in four different hospitals :eek: ) we stopped both Exelon and Memantine. There did seem to be a significant decline around that time, but I would hesitate to ascribe it to stopping those drugs, as she had had many recent changes of medications, the change of venue, etc. The Alzheimer's home mildly pushed for stopping the memory drugs, I think partly on the theory that Mom's mental capacity was so poor it was not worth trying to hold her in this condition, but rather just focus on keeping her as happy as possible.

    Karen
     
  13. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    39
    Staffordshire
    #13 suptowngirl, Jan 3, 2006
    Last edited: Jan 3, 2006
    Hi ALL ,
    I have just been reading all your letters on Ebixa ( Memantine ).
    My mom has been suffering with AD for nearly 2 years now and she is getting worse it seems by the day. She has been prescribed Reminyl and has already had it increased from 8 to 16 mg per day. She is also taking a drug to stop her hallucinating as she thinks there are people in her house ( when it is the TV that is on ). She is very depressed these days and is crying an awful lot. We have an appointment with the consultant on the 26th of January ( a general 3 month check ) but have just brought it forward to this Thursday 5th. I was wandering whether to ask about Ebixa and whether it would do mom any good. After reading your letters I think I will speak to him about it. I will let you know the outcome.
    Take Care All

    Suptowngirl
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,058
    Toronto, Canada
    My mother was diagnosed with Alzheimer's 5 years ago today. At that time, she was put on Aricept & a few other things (the usual - antidepressant & antipsychotic). Over the years, we have made changes to meds when necesary.

    She was put on Ebixa last June, after I politely whined & nagged & reminded & talked & talked & talked. It has worked very well for her. I can't say her cognition has improved very much but her mood is so much better that it was. Overall, she is less anxious & less agressive & less of a temper.

    So from my point of view it is worth a try. Ebixa is not covered here in Ontario, so we pay the equivalent of £88 or so per month. It is well worth it to us. After all, if you don't see any positive changes after 3 or so month, you can always discontinue it. I'm willing to try anything that will help. We will keep my mother on Ebixa until such time as we see a drastic decline. Even then, we may simply choose to keep her on it. I've heard too many stories about the drastic decline of someone once they are taken off a medication.

    Good luck
     
  15. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    39
    Staffordshire
    #15 suptowngirl, Jan 3, 2006
    Last edited: Jan 5, 2006
    Hi Becky Jan , Joanne,
    Thanks for the info. I have printed some information on Ebixa and I will take it along to the hospital on Thursday.
    I know it may not suit everyone but even if it doesn't suit mom at least we will have tried and like you say , it can be stopped if it doesn't seem to be working for her. When it's someone you love ,you know you have to try.
    I will let you know how we get on.
    Take Care.
    Suptowngirl
     
  16. Jude

    Jude Registered User

    Dear BeckyJan,

    My mother was unable to take Aricept because it made her physically ill. For the first 3 years of AD she took no medication at all until our CP suggested that she try Ebixa. By the time she started the medication she was almost unable to string words together in a coherent sentence and could not dress herself. The CP said it would either work very well or not at all.

    The results of Ebixa after a month's progressive dosage increases were pretty amazing. She is now, after 2 years, still able to assist with washing and dressing herself and her speech and language ability improved dramatically and is maintaining.

    Sadly, it doesn't work in every case. For my mother, it made an incredible difference and she didn't suffer from sickness or depression at all. Give it a go.

    Jude
     
  17. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    To all who have responded:
    Thanks a lot for all your comments. They have been most helpful and much food for thought. Any more comments more than welcome.
    Seeing a different GP tomorrow - concern now about oedema - but will try to question about Ebixa at the same time.

    Best wishes to all and thanks again BeckyJan
     
  18. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    39
    Staffordshire
    #18 suptowngirl, Jan 5, 2006
    Last edited: Jan 5, 2006
    Hi BeckyJan, Hi All,
    We went to the hospital today (Thursday ) and I spoke to my moms consultant about Ebixa. He said that he did prescribe it for only a few patients but they were not allowed to give it to everyone, ( Nice, being behind all this ). Ebixa is prescribed for moderate to severe cases of A D and mom proved to be tested as moderate.
    He said that it wasn't the doctors that didn't want to prescribe Ebixa and he said that they haven't stopped it yet , so he is going to let mom give it a try along with the reminyl that she is already on. She is to start it in 3 weeks time as he has also changed her night tablet and wants that to get into her system before adding another new one. ( No word about going private ). He was only too willing to help us . Hope this helps a little.
    Take Care
    Suptowngirl
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    fantastic!

    so much better to try and have a chance of winning.... and then to win!

    well done!
     
  20. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Went to Alz Cafe this morning - had great discussion about all sorts of things.
    Apparently 'Derbyshire' do not prescribe Ebixa although those who push sometimes get a prescription! However still with mixed feelings about whether or not to try David on it - he has only been on Aricept increased to 10 mg 2 mths ago (prev on 5 mg for 18 months). (It will be dreadful if NICE go against Aricept as I am certain it has helped David - I cannot believe that newly diagnosed AD patients could be denied help from it).

    Now David is on diuretic tablets so maybe worthwhile to wait for things to settle down before raising Ebixa again - I really have valued all the comments. As with all these things one thing seems to suit one person and not another.

    Best wishes to all BeckyJan
     

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