Private Prescription for Memantine

Discussion in 'ARCHIVE FORUM: Support discussions' started by Arcticfox, Oct 23, 2004.

  1. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    I have a letter from the surgery who is treating my wife. The letter mentions that a drug which is not available under the NHS but is available should we find a doctor who will issue a private prescription. The drug is Memantine we require a doctor who will prescribe it. I understand that fees are payable. Can anyone place me in touch with a doctor who can write a prescription for this drug.
     
  2. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    memantine

    Dear Articfox,
    Have a look at the following website:
    www.memantine.com
    I struggled to read it, but it prints off ok.
    Good luck,
    Carmen
     
  3. Jude

    Jude Registered User

    Dear Articfox,

    You could also ring your Consultant Psychiatrist who should be able to write a prescription or arrange for a GP to do so.

    Best wishes,

    Jude
     
  4. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    Memantine

    I am most gratefull to Jude and Carmen. I will get in touch with my wife's G P on Monday for the name of the Consultant.

    As a side issue, what a good idea this forum is, I can send this page to my wife's son who is in Australia.
     
  5. Jude

    Jude Registered User

    Dear Articfox,

    I've just had a look at my mother's prescription. Memantine is a relatively new AD drug and also known as Ebixa, which is what my mother has just started taking during the last 6 months. She was allergic to Aricept.

    Apparently it is very expensive, which is why most GP's won't prescribe it because they can't get a total refund for it. So much for medical ethics......

    Our Consultant Psych prescribed it initially, although he did say that he would get shot for doing so and was subsequently rather amazed that our local GP took over the prescriptions without so much as a murmur, but was quite prepared to write further prescriptions if the surgery would not do so. Anyway, do speak to your Consultant and see if you can organise something similar.

    It seems pretty silly to have new drugs available if they cannot be prescribed on the grounds of being too expensive! You should not have to pay for this.

    Good luck

    Jude

    PS: Where in Oz exactly?
     
  6. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    Now that's interesting, lets hope that my GP has access to this forum

    Newport, Sydney
     
  7. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    It would seem that I have spread confusion by not explaining fully. The letter advising about the treatment through Memantine originally came from the office of the Consultant Psychiatrist. It was through that source that I was advised to see my wife's doctor. My wife's doctor stated that because Memantine was not on the list of prescribed drugs that was available for her to prescribe that prompted me to enquire on the Alzheimers website.

    I am thinking now to find a GP who (after checking with my wife's GP) will issue a private prescription. Do things happen in this fashion?
     
  8. Jude

    Jude Registered User

    Dear Articfox,

    Crikey, talk about making you run around in circles. Could the Consultant not give you an initial prescription for you to then present to a GP who would be agreeable to prescribe repeats....? Why can't every GP do this, I wonder? That brings me back to my question of why are drugs manufactured if they aren't going to be freely available? And what is the point of prescribing a drug if GP's won't give it to you without charging you for something that you know is free on the NHS. We seem to be right back to the discrimination against AD sufferers again.......

    Our Consultant did say that he would 'get shot' for prescribing this drug because it was new and at experimental stage, so that it would either work really well or not at all. [Have a look at some of my earlier posts about Ebixa on on TP around Feb this year]. At that stage, I think he had only prescribed it for one other person in this locality, and as it turned out it didn't work for this individual although Ebixa has worked wonderfully well for my mother.

    Jude
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    #9 Norman, Oct 24, 2004
    Last edited: Oct 24, 2004
    Artic fox
    before Aricept became available on the NHS our consultant gave a private prescription and we paid for the drug.
    At that time Aricept had not been approved by the NICE committee so there was a reluctance to prescribe it.
    When the drug was approved he was happy to prescribe it.
    I am wondering is ypur situation is one in which cost is the problem and the dreaded post code lottery?
    Private doctors are usually only too happy to write a private script,at a charge
    NORMAN
     
  10. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    Thank you for your contribution Norman. The problem is that the drug Memantine has not yet been approved due to the fact that is undergoing 'Clinical Trials'. Our Consultant Psychiatrist has said that they are unable to issue Private Presciptions as "I don't do any private practice I am not in a position to offer a private prescription".

    I am simply trying to find someone who will issue a private prescription. However after a phone call this morning, there may be further developments.
     
  11. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    Memantine

    I don't know of anyone in our neck of the woods who prescribes it privately, but part of that is 'cause there's more to it than the prescription.

    Firstly, the side effects need looking at, so there would need to be follow up to check out if there's any of the recognised problems of dizziness, confusion, headache, hallucinations, tiredness, vomiting, anxiety, hypertonia, cystitis and increased libido.

    This would mean, after starting a private prescription, that there'd need to be a consultation to check out that the memantine's alright and isn't causing these difficulties.

    Second hassle is the dose. It is anywhere from 5mg to 20mg a day, so needs to be increased over time in 5mg steps.

    And, as well as seeing the person and checking safety and issuing a prescription, there's then the need, yet again, to review things to check out side effects.

    So typically could be 4 consultations to get the dose right, and 4 consultations soon after each dose increase to check out side effects.

    Thirdly, when on the right dose, there has to be monitoring of this. In part this is 'cause the dose of the drug can need to change as time ticks by, but in part it's also through dementia having different phases, so treatment (including drugs) might be right at one point in time but need fiddling with further down the road.

    With this minimum input, that could be 9 reviews in the first year, with more necessary following up of things in subsequent months and years.

    Bottom line is, if done right, there'd be a heap more to it than just getting a prescription a couple times a year!
     
  12. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    Interesting. We got Ebixa for my dad at the last CP assesment (16th August) after pressing for medication. The CP had taken dad off Aricept previously as my father couldn't remember if it made a difference (!). CP made a big show of how big a favour he was doing us with Ebixa, and how the prescriptions would have to be written out in his private office, etc, and I guess the cost is the reason. Since then dad has had one assesment - last thursday, but the CP didnt turn up. Anyway, the nursing home where he was staying has since given dad 14 days notice, (he's not profitable enough) so we are stuffed again!
     
  13. Jude

    Jude Registered User

    Dear John,

    My mother began a course of Ebixa in February this year. The prescription was for 10mg, which started at 2.5mg per day for the first fortnight, thence to 5mg for the second fortnight, 7.5 mg up to six weeks and then 10mg at 10 weeks. All stages of this were monitored by myself and then the carers on a daily basis, with the proviso that we immediately phone the C/Psych if there were any major problems.

    My mother initially had morning dizzy spells of a minute of so when getting out of bed, but since she had those anyway, it was difficult to ascertain whether it was her blood sugar level or an effect from the Ebixa. None of the other contraindications presented, unlike with Aricept which made her incredibly sick from day one. To date, she has had no adverse reactions to Ebixa.

    The positive effects have been pretty amazing. Where previously she was unable to wash or dress, she can now do this pretty much unaided and under verbal supervision. She also helps my father with washing up and can remember where cutlery and crockery live in the kitchen. She also can find and use the toilet unsupervised, although we usually lurk around outside the door 'in case'. She is also generally much happier and can join in conversations and activities that she previously was unable to follow. A negative spin off is that she now is more prone to sundowning and joins my father in marching up and down the hallway and emptying wardrobes. This is irritating, but it is a form of exercise I guess.

    My mother has had 3 checkups with the Doctor and C/Psych this year so far and they are both extremely pleased with her progress.

    So far, I think it has been a great bonus for her because she is happy and feeling useful, rather than previously being inert and depressed.

    Best wishes,

    Jude
     
  14. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    I'd agree with Jude on that,
    My dad seems much more alert and aware of his situation - even in the short time he has been on Eboxa. Previously he would often be in the past (war, etc) but that is now quite rare. He is calmer. He still packs everything up and wants to travel to Scotland on the bus, but that often strikes me as being a sign of rationality.
     
  15. Jude

    Jude Registered User

    Dear Fraser,

    I'm really glad to hear that your father has responded well to Ebixa because it is a 50/50 gamble apparently.

    Previously my mother was in floods of tears for no discernable reason and totally unable to help with dressing herself or any small tasks and usually ended up being a dead weight. Now she is also much more active and has regained her enjoyment and energy for at least 3 walks a day. She also takes much more notice of her environment.

    She started the programme in February and when I returned in June it was amazing to see how much better she was - even to the point of actually knowing who I was when I arrived home!

    Her response was worth a million dollars! 'Oh, here's Judith. You're my daughter, aren't you?' I could hardly believe it and didn't ever think it possible that I would ever hear her say those words again.......

    Jude
     
  16. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    Jude, grand to hear that it's worked out well, and I didn't at any point suggest not going for private scripts - was just wanting to share that in some cases I've known private prescribing escalated in expense, as subsequent contact/support has ramped up the total costs big time . . . so cautioning that it's worth sussing out how it's all likely to unfold before leaping in to it!
     
  17. Jude

    Jude Registered User

    Dear John,

    You certainly have a very valid point about all the extra add-ons and follow up care required.

    In our case, it was very much a case of this is a new drug, so 'suck it and see' although we did go over the possible side effects very carefully beforehand. My mother was getting to such a state that I figured that anything was better than nothing. Fortunately, it has proved to be effective, because she was taking no medication at all before this.

    I am very much against taking 'drugs' at the drop of a hat. My father recently had a bout of aggro behaviour and the doctor suggested that I might like to put him on an indefinite dose of valium. I got a fortnight's script and doled them out as I thought necessary, when he became particularly stroppy. He's back to 'normal' and we still have a half a dozen tablets left after 6 weeks. I hate the thought of my parents being sedated to the eyeballs every day. Tablets are a last possible measure, when reasoning no longer works. There have been a couple of occasions where I quite fancied them myself actually....!

    We have always been an anti-pill taking family. My parents and I haven't ever been sick in 50 years and not very sympathetic towards others who pop pills at the slightest hint of a cold. Obviously medication has a place with AD - especially essential drugs such as Aricept, etc, but the other sedatives I prefer to leave out of the equation as far as possible. My parents will have their annual flu jab next week, but that's pretty well the extent of things chemical.

    My mother takes Ebixa and Zopiclone and my father takes Aricept and Asprin and that's it, unless absolutely necessary. Unfortunately, the doctor prescribed Zopiclone sleeping tabs for my mother whilst I was overseas and they were living in close care. These are apparently highly addictive and it's too late to change now, as I would have tried something else had I been here.

    I know drugs can be useful, but less rather than more at this stage I think.

    Jude
     
  18. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    Re: Memantine

    John tried to send you a private message but it isn't possible. What I would ask you and I mean no disrespect just wanted to know the knowledge of the source, and that is are you or do you speak with medical knowledge behind that what you have wriiten?
     
  19. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    Whoops - fiddled with options, sent a message, hopefully all's well!
     
  20. Arcticfox

    Arcticfox Registered User

    Oct 23, 2004
    7
    High Peak, UK
    I am mad as hell

    After being denied any assistance from my wife's consultant towards obtaining Ebixa (Mementine) even though the consultant herself recommends it, I found a doctor who specialises in Alzheimer's and who I thought would issue a private presciption. Today I recieved a phone call from his Secretary informing me that he couldn't treat my wife as their was a conflict of interests between his office and the office of the Consultant who is treating my wife. There is also a conflict between the PCT of my wifes doctor and the PCT of the consultant.

    There is also a story that because of copyright laws I can reproduce but others may be able to read a frontpage story that appreared in a Stoke-on-Trent, Evening Sentinal dated Friday December 24th, 2004.

    After recieving the news from the doctor's secretary that he would not treat my wife, I paid a visit to my M.P. I will keep you informed of any progress.
     

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