How have people managed to get Memantine/Ebixa prescribed/

[tre]

My husband has had a recent assessment and although I have not received my copy of the Doctor's report yet, I am told by the nurse that he has recommended trying Ebixa either instead of or in addition to the 10 mg Aricept David is already taking. I did ask the doctor when we were being assessed about this but we saw him at a London Hospital and he said he could not prescibe it. They are suggesting shared care but our local team here in Herts would still be responsible for the prescribing. I have seen some posts from others mentioning the person they care for is on Ebixa/ Memantine but are some areas prescribing it and not others ( the postcode lottery) or is it somehow being obtained on a Private prescription or are you part of a trial. Now we have a report suggesting David would benefit from this I wonder what I need to do next.

[Anne&C]

We're in Northern Ireland and my sister was prescribed it on NHS by her psychiatrist about 18 months ago. She was first prescribed Aricept but her GP stopped it after 6 weeks because she had a bad reaction to it. A couple of weeks later the consultant (reluctantly I was told by the carer who accompanied her to the appointment - she seemed to be annoyed GP had agreed to stop the Aricept!) agreed to try Ebixa and it has proved helpful.

[Jancis]

Hi tre,
I can't answer your question but wondered if you had seen this AS fact sheet?
http://alzheimers.org.uk/site/script...documentID=147

[tre]

I have read the link and also had previously read the NICE guidelines. David is suffering from PCA and recently is experiencing severe anxiety/ panic attacks. I do not know whether he is now assessed as having severe or moderate dementia. Is this linked to the MMS scores? I guess I can ask this. I have been a bit thrown off course because at our last appointment in London the doctor said he would write to the GP and the local consultant and I would get a copy of the letter. The letter has been received by the GP and I asked London to email me a copy but was told that for speed the letter was sent out to the medics first and my letter had not yet been typed up. I had assumed I would get a copy of the same letter- had I realised this was not the case I would have asked more when we were with the London doctor but we were a bit rushed out of the consultation because they had booked David in the same day for an MRI scan and we must not miss our slot.
It seems that if we are to get Memantine the local consultant MUST prescribe it, but we have not any appointment with him in the pipeline. Is there anyone who lives in Herts who is receiving memantine? Or anyone elsewhere and if so what criteria were the deciding factor. I am aware that it is possible for those who react to Aricept but David is tolerating this well. I asked about private prescriptions for the drug because it all feels like wading through treacle trying to get a quick response here.
David has deteriorated recently and it is heartbreaking to see him so anxious and sad. I think I might be at fault because when we go for our six monthly appointment with the consultant I try to only point out the positives rather than let them know of any things that have deteriorated because David is perilously close to an MMS score of 10 and I am really scared they will take the Aricept away and that will be the start of a further downward slide. He is now starting to tell me that he is not worth bothering with and that I should want to be rid of him. Nothing is further from the truth but it makes me so sad to hear this. I am on my own and have no-one I can call on to help and am frequently finding myself tearful and useless. I admire what a lot of you seem to manage and want to find strength from somewhere to cope better.
Tre

[JackMac]

Hello

Someone asked about this a few weeks back and I replied so I'll give you the link to that so you can read my experience.

http://forum.alzheimers.org.uk/showt...019#post490019

I had to push a little to get mum on both drugs together but according to the research done so far, it may be better to leave people on aricept with Ebixa.

Since writing that last post, not much else to say. I wouldn't say there's been any dramatic improvement but I do think she has some better moments. It can take 3 months or so to have a full effect though I think.

jackmac

[tre]

Dear JackMac,
thanks for this. It is very helpful. I do not think it is a wonder drug but I would like David to try it. It was interesting what you said about the MMS score. David scored 15 in November 2010 and I think 12 or 13 in May 2011. I do not yet know what he scored on 22 August 2011 when we were seen in London but I think it was probably lower. What I am trying to do is put together the best case I can for allowing David to try Ebixa. I am however a bit anxious that I have to be aware that it might not work at all for him or he will not be able to tolerate it. I do not want him to be denied it because they think I have unrealistic expectations of what this drug will do and I will be unable to cope if it does not work so I want to present a calm, reasoned case.
Tre

[JackMac]

Hello

It's so hard isn't it. You want to present your case in the best way that will persuade them but it's hard to know how to do that. My dad suspected that the only reason they didn't agree to mum going on Ebixa when we first asked was because it was my idea, not theirs and they like to be in control. I don't know if he was right or not but I was very careful about how I worded it all. The letter I wrote them first of all though let them know that I am doing my research so they had to come up with good reasons to refuse. When they said no as she's not 'moderate' yet I asked them to agree to considering it if she got worse which they did. Literally a week later she was worse and then they had to stick by their word which thankfully they did.
We do feel very fortunate that they backed down so quickly, I don't think all doctors would. Part of me thinks that they were interested themselves in what would happen if they used both drugs as it's still rarely done. They have observed improvements in her themselves and her score has gone up. I wonder too if doctors are scared to try it as there's not much research done yet and what if something goes wrong and they get the blame? In our case I had put something in writing pushing for both drugs so they had this as 'evidence' if you like of our request should anything go wrong.
It's all speculation on my part though, not fact! But still worth thinking about. If anything went wrong we would not dream of complaining and will always be thankful that they listened to us and tried what we asked.

Had they said no, I would have asked for a second opinion from another consultant.

I take mum to church on sundays and haven't been over the holidays. today one of the ladies who sees a lot of her said she feels she has improved and her conversations are much better.

From what I have read people tolerate Ebixa better than aricept. Mum has had no bad side effects at all so far and it's been a month or two now I think. She's had no side effects at all that we've observed.

Oh and I had to assure the doctors a few times that we were not clutching at straws and expecting a cure! It is true that they worry that relatives are expecting miracles. I had to really convince them that this was not the case. You are right and when you speak to them or write to them, make it clear that you understand the condition and that there is no cure but that you just want to try everything to help David have the best quality of life for as long as possible.

please feel free to ask me anything.
good luck with it all
jackmac

[tigsmum]

I realise that things may vary from one health authority to another but my husband was prescribed Ebixa on diagnosis of AD 18 months ago. At his last appointment his MMS score was 12 and I was told that if this has dropped by his next appointment (which it certainly will have) he will no longer be prescribed Ebixa because it is no longer considered to be of any help at that stage. I think (but I was so stunned to hear this I don't think I concentrated too well) that the nurse said that the government had made this ruling.

[JackMac]

I keep thinking about this.........I think we should all get together and petition for a review of the MMSE scoring system! I have lost count already of the amount of times I have told the nurse/doctor that my mum has deterioated and we're having major problems, and they say "but her MMSE score went up so we can't do anything!"
I was told at the start by the useless community nurse that information given by us would be taken into account too! It's clearly not in most cases.

The MMSE certainly has its uses but it should not be a single tool used to decide what meds/treatment someone should have!

If you feel your husband will get worse, don't be afraid to fight them on this.

[tre]

I too wonder whether the rules vary. It is difficult to jump through the hoops to get treatment if it is not made clear what your needs have to be to be eligible and if it can be different depending on where you live. Tigsmum- does he just have Ebixa or Ebixa and Aricept.
Having looked at the NICE guidelines it says " You should be able to have memantine if you have:
*moderate Alzheimer's disease and cannot take donepezil,galantamine or rivastgmine OR
*severe Alzheimer's disease
this makes it a bit of a puzzle that you seem to have been told that MMS of lower than 12 would mean Ebixa should stop. I found the NICE guidelines at www.nice.org.uk/guidance/TA217. The issue date for the information was March 2011 so I hope it is up to date.
Tre

[allend100]

We were originally told mum could only have this as part of a clinical trial, we were just in the process of moving them to a bungalow and mum was particularly anxious so we declined. We are lucky that we have memory clinic near us and have been under their care since diagnosis. We see the consultant every 3 months. Mums aricept was stopped in december last year and we,ve been without drugs since then. I had read that NICE had released memantine and asked on the last visit if we could have it and was told no. But we have been today and he has prescribed it this time. Whether that has anything to do with how mum has deteriorated, as we explained the disturbed nights (she gets up anywhere between 3 and 6 times to 'tidy up') and the constant wandering in the day. Can I suggest you try to get your appointment with the consultant brought forward.

Yet to see if this drug will help, we believe the Aricept slowed things down

Denise