Galantamine

[Lulabelle]

Hi All
My Mum, 86 in February and diagnosed 10 days ago with Alzheimer's and Vascular Dementia, has been prescribed Galantamine by the Memory Clinic. Is anyone here familiar with this drug? Good or bad experiences with it? Any advice or information would be very useful to me.
Thanks very much
Lulabelle

 

[Uratopper]

Hello, Lulabelle, I've just noticed that you hadn't had any replies to your queries re Galantamine also called Reminyl. I've not seen many references to it on here so perhaps not prescribed as widely as other drugs.

My father was put on it approx 2 years ago, as soon as his AD was diagnosed, starting with a lower dose then gradually increasing. It was described to us as a attempt to slow his decline down and although his dementia state has gone downhill it has done so slowly and steadily with no dramatic downturns. He tends to plateau for some time then have a little slide followed by plateau again.

The problem with any medication, as I see it, is assessing the effectiveness. Is a downturn due to the medication not working or would the downturn be worse if not on it? Also everyone and their dementia is different, there's no "one size fits all" answer.

I would recommend that if you have concerns, about efficacy or side effects, that you discuss with the prescribing medic - as I've said everyone is different. I see that you are in France so is Mum there as well or are you having to look after her from a distance?

I'm sure I saw a post on here a short time ago talking about caution when discussing drugs but I can't find it now. Perhaps some kind person would post a link, please?

Hope this helps you Lulabelle
Take care
Uratopper

 

[Uratopper]

Found it:

http://forum.alzheimers.org.uk/showthread.php?51037-Medications&highlight=Drugs

 

[Big Effort]

Hello Lulabelle,
Greetings from the other side of France. Every day I wake up I am just glad to be here!
I saw your post and thought I would answer it to boost it back up to the top, in case other wise ones can help you out.

How are you doing yourself? You were so kind to me in my coming-to-terms-with-Mum-has-Alzheimers-and-this-isn't-going-to-get-better phase. I am much better in myself now and coping well almost all the time. No comparison with how I felt in June and July and August.

It must be so worrying for you to be over here while your Mum is over there? At least Mum is right where I can be with her.

Hugs to you, BE

 

[mrjelly]

My Dad has been taking Galantamine for nearly a year and seems reasonably OK on the starting dose. They did try increasing it, but it seemed to affect his appetite so they reduced the dose again. He seems to be putting on weight again now, so perhaps there is scope to try an increased dose again. I think it may have reduced his resting heart rate (last measured at 55 beats per minute) but the doctors don't seem particularly concerned about this.

Overall I think Dad is a bit more clear-headed than this time last year. Then he was talking about "going home" to the house he left 30 years ago, and he has not been saying that since he went on these pills. I don't think his abilty to store new information has improved to any noticeable extent though, as he is always surprised when his partner goes out to her weekly art class or visits her relatives which she does the same day every week.

 

[Acco]

Beneficial for both of us

Hi Lulabelle, My wife has been on galantamine (Reminyl) since diagnosis 7yrs ago. Because, like any medication, it's effectiveness on the individual will vary and also due to the changeable nature of the desease it is difficult to quantify the benefit. What I can say is that she has tolerated it from the outset without any negative side effect and also that I am happy in the knowledge she has been on some medication since early diagnosis and in the belief that it has delayed progress of her decline. I suspect after this period of time the benefits are no longer measurable but for 7yrs we have pretty well been able to do what we have wanted and continued with life as normal. More recently my wife was prescribed Acumor XL (still galantamine based) rather than Reminyl because I suspect it is less costly (the format of the medication suggests this) and regretably it caused nausia and sickeness and for the time being she has been put back onto Reminyl.
One other point which may be helpful, if not now perhaps in the future, is that the medication can sometimes be obtained in solution form. My wife started to chew rather than swallow the medication, and occasionaly would consider it foreign and so spit it out; not a problem with the liquid form.
I hope this is of some help.

 

[rjm]

Hi Lulabelle,

My wife was on Galantamine for several years with no ill effects. Whether it had any positive effects I really don't know, maybe she would have gone downhill faster without it but how do you tell?

 

[Lulabelle]

Thank you so much for your replies, BE, Uratopper, Mrjelly, Acco and rjm. I must admit that I was beginning to despair of finding anyone who had experience so I am grateful for your input.
I have been checking out this site for a while and am SO delighted to see such a lot of good advice but I had not seen much info on Reminyl - lots on Aricept and other drugs but very little info on the drug my mum has been prescribed. As you all say, and I am all too aware, it is so hard to say whether the sufferer would have been worse or better or stayed the same on any drug but Mum is willing to have a go. I think one of the things which worries me is that Mum is very susceptible to sickness whenever she takes antibiotics or has a general anaesthetic so, given that this a common side-effect, I wasn't sure it would suit her. I think I will just have to keep an eye on her as far as is possible with me in France and Mum in South East England.
BE - thanks so much for your extra bit of help getting this thread to the top. I have been keeping an eye on you and am pleased to hear that you have been coping much better lately. I know that you have good and bad days but I do love to read your comments. Hugs to you and Mum (and that blessed dog!!). L

 

[carolef1]

Hi Lulabelle, Like you I have been trying to find out about Galantamine because my mum is 85 and has recently started taking it, she has done the first four weeks at 8mg and she was complaining on times about tummy pains and had diarrhea occasionally, but since moving to the 16mg this week the symptoms seems to have got worse. She complains of suffering with wind, tummy pains and diarrhea again, its not all the time,she isnt eating much as she thinks it is connected with what she is eating rather than the medication.

I have asked advice from the GP and am waiting a response, as she has recently moved house, the local memory clinic havent seen her yet so I dont feel I can ring them at the moment. My mum has always had a sensitive tummy so I am not really surprised.

I am loathe to think about her giving it up really as I do think (maybe its in my mind) that she seems better at times.

I would be interested to hear how your Mum is getting on with the treatment, hopefully she will be ok without any side effects.

 

[scarletpauline]

Hi Lulubelle. My husband has been taking Galantamine for three and a half years now, he has (touch wood) had no side effects and it has definitely slowed his decline down. It's mainly just confusion with him and in fact the last time we went to the Memory Clinic they put on a nine month recall instead of the usual six months.

 

[nitram]

"...More recently my wife was prescribed Acumor XL (still galantamine based) rather than Reminyl ..."


Acumor XL is modified release, Reminyl is not but Reminyl XL is.
Modified usually means a stronger dose per tablet but with the release of the drug spread over some time.
http://www.swallowingdifficulties.c...mulations/different-coatings/modified-release

If you scroll down you will get the relative dosages and prices of the drugs
http://www.evidence.nhs.uk/formular...ous-system/411-drugs-for-dementia/galantamine

 

[Lulabelle]

Thank you for the further comments on this drug. As yet, the treatment hasn't started largely because I have been waiting since Monday for the memory clinic consultant to call me so we can discuss it (at his suggestion). I keep sending emails to the secretary who has been very kind but the keep bouncing back undeliverable so I am getting increasingly frustrated. Grrrrrr.
I think I shall have to phone and get cross (ish) now.
I am keen to get started but really hope she doesn't have any sickness - she has a sensitive stomach too Carolef1. It seems the doctor wants to start her on 4mg and gradually build up so I hope this will minimise the side-effects for her. Fingers crossed. I will certainly keep you posted, if I ever get to talk to the blessed doctor......