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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 14-05-09, 10:15 AM   #1
colettew
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Join Date: Feb 2009
Location: Marlow, Bucks
Posts: 334
Default Newby and question about Memantine

Hi all, have been lurking for a while and enjoyed using this forum to find out more about HD. Husband was diagnosed December last year. Prior to that we had no knowledge of HD - his parents still being alive and perfectly well. He is in the early stages. I looked forward to getting to know you all better. It is hard to do that first post - part of the process of acceptance I guess.
I do have a question regarding the drug Memantine (think that is how you spell it) and I wondered if anyone knew anything about it. It is the drug licensed for Alzheimers and in trial in the US for HD. I have heard great things about it. Just wondered if anyone had experience of it and if they have been able to get it prescribed over here? I know there is some controversy over the NICE guidelines and Alzheimers.
Thank you in advance for any help.
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Old 14-05-09, 08:52 PM   #2
heatherp
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Default Re: Newby and question about Memantine

Quote:
Originally Posted by colettew View Post
Hi all, have been lurking for a while and enjoyed using this forum to find out more about HD. Husband was diagnosed December last year. Prior to that we had no knowledge of HD - his parents still being alive and perfectly well. He is in the early stages. I looked forward to getting to know you all better. It is hard to do that first post - part of the process of acceptance I guess.
I do have a question regarding the drug Memantine (think that is how you spell it) and I wondered if anyone knew anything about it. It is the drug licensed for Alzheimers and in trial in the US for HD. I have heard great things about it. Just wondered if anyone had experience of it and if they have been able to get it prescribed over here? I know there is some controversy over the NICE guidelines and Alzheimers.
Thank you in advance for any help.
Hi Colette
Welcome to the board. It is hard to do the first post - I still don't post much! However there is lots of help to be had on this board and I'm very grateful for it. I'm sorry to hear of the position you find yourself in but am sure you'll get lots of information re Memantine. How old is your husband and how is he affected if you don't mind me asking? HD came out of the blue for our family too with no known family history when my Mum became ill. She was diagnosed a couple of years ago. Now there are three at risk and seben grandchildren. Its a BIG shock.
Just another thought - are you familiar with HUNTINGTONS DISEASE ADVOCACY message board? Its the American version of this. There is a lady on there called Barb who posts quite a lot. If you haven't seen it already have a look. I know Memantine has been brilliant for her.
All the best
Heather
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Old 14-05-09, 09:25 PM   #3
South Coaster
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Default Re: Newby and question about Memantine

Hi there and welcome to the message board

I'm going to the next meeting of The HD Clinical Research Group which is in Cardiff next week

This thread has some detail about that http://www.hda.org.uk/board/showthread.php?t=1040

I don't think I can get that question on to the agenda in time for then but I'll ask the consultants who will be there

If anyone can find out an answer (or has the answer) in the meantime, if you post on here - I shan't need to ask :)
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Old 14-05-09, 09:34 PM   #4
dennisw
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Location: South Cumbria
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Default Re: Newby and question about Memantine

Hi Collettew,
Welcome a board. Like you our diagnosois came out of the blue, brother-in-law, 7 years ago. In this case both parents died early.
I continue to be suprised by the number of "out of the blue" diagnososis. I had incorrectly assumed most suffers know HD was in the family. From the numbers seen on the board not the case.
Hope we can be of help, but I have not heard of the drug you mentioned.
Dennis
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Old 14-05-09, 10:27 PM   #5
Caz
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Location: essex
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Default Re: Newby and question about Memantine

Hi collette

Welcome to the message board. I am 52 and in the early stages of HD. I have 3 grown up children.

I have not heard of that drug as yet.
All the best
Caz
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Old 15-05-09, 01:51 PM   #6
colettew
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Location: Marlow, Bucks
Posts: 334
Default Re: Newby and question about Memantine

Thank you for all your replies and welcomes. My husband is 40 - symptoms started at about 37 - his main problems are balance, clumsiness and mild chorea. His speech can be delayed but not hugely noticeable. He is currently coping well at work. Fingers crossed it lasts x
Thank you for the person who offered to raise it at the meeting - I have also asked our HD Nurse to raise it as well at a meeting she was due to attend. I had read about it after reading Barb's posts on the American website. It seemed to make such a difference for her it seemed worth pursuing. I have also spoken to GP who indicated that as not licensed for HD may be a problem to prescribe but he didn't say definately not. Think they need more clinical evidence for example outcomes of trials. Will keep you updated if I hear anymore which may benefit some of you.
Thanks again
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Old 25-05-09, 12:32 AM   #7
South Coaster
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Default Re: Newby and question about Memantine

Some information regarding Memantine on the UCL website here http://hdresearch.ucl.ac.uk/research/global-update/

(about half way down the page)
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