Stopping taking Memantine

[thebes]

We have just returned from a check up with our GP. My OH has recovered from his chest infection but remains very tired, reluctant to get out of bed and wanting to go back for a rest ASAP. He has very little interest in or capacity for any of our usual activities or visitors. I have been wondering how long I can cope with the increasingly imprisoned existence, and with what seems like the probability of him being bed bound within a few months. I am in any case more than a bit sorry for myself as my arthritis has flared up recently , all that assisting with transfers etc
Our dear GP gave him a good going over and instead of the pat on the head, and well what do you expect comment I had steeled myself to hear, he said he was seriously concerned that the majority of what has been happening could be side effects of Memantine which he has been on for 18 months following a severe adverse reaction to Arricept. He commented Particularly on the extreme weariness and giddiness, and unsteady walking. So he recommended stopping it for a month to see how my OH is without it. His view is that the limited impact of Memantine on the progression of the disease is not worth it if it is causing the very apparent physical decline which is limiting every aspect of his life.
So that is what we are going to do. Has anyone else experienced this?

 

[nitram]

Memantine was a life saver in calming my wife down.

If the prescription was originally made by a consultant I would contact them and ask their opinion. Even if it wasn't I'd be tempted to try and obtain a specialist's opinion.

 

[fizzie]

I would take the GPs advice whilst i sought other info. most gps would be unlikely to reverse a consultants prescription without very good reason

 

[Beate]

I agree with nitram. I believe the consultant from the Memory Clinic usually has the say over which dementia medication to prescribe, alter or stop and he just tells the GP of his decision so he can continue prescribing it until otherwise told. Therefore he should definitely be informed that this is what the GP suggested.

 

[fizzie]

however there is a lot of information on the internet about mentamine causing extreme fatigue. I accept that the internet is not the best source of information necessarily but it is definitely a good source for researching different things.

 

[BR_ANA]

2 years since my mom has it stopped. I didn't noticed difference.

 

[Beate]

I wasn't talking about who is more knowledgeable or reliable, but if the consultant is usually the one making these decisions he should at least be informed before medication that he prescribed is stopped.

P.S. I use "he" for the sake of of simplicity - I am aware it could be a woman doctor also.

 

[nitram]

"...however there is a lot of information on the internet about mentamine causing extreme fatigue."

"4.8 Undesirable effects
Summary of the safety profile
In clinical trials in mild to severe dementia, involving 1,784 patients treated with Ebixa and 1,595 patients treated with placebo, the overall incidence rate of adverse reactions with Ebixa did not differ from those with placebo; the adverse reactions were usually mild to moderate in severity. The most frequently occurring adverse reactions with a higher incidence in the Ebixa group than in the placebo group were dizziness (6.3% vs 5.6%, respectively), headache (5.2% vs 3.9%), constipation (4.6% vs 2.6%), somnolence (3.4% vs 2.2%) and hypertension (4.1% vs 2.8%)."

My emboldening.
https://www.medicines.org.uk/emc/medicine/10175

 

[Raggedrobin]

Memantine has helped my Mum remain calmer. i would think if you were stopping it, it would be one to stop slowly - halve the dose first, that sort of thing. This GP obviously has a view on memantine but it can be helpful too and fatigue of course can just be part of the illness. It's a hard call.

 

[fizzie]

point taken Nitram and Beate - hard decision to make and your call. Lots of different opinions on here, sure the consultant needs to be consulted no denying that so it is just a question of how accessible your consultant is - in this area you could shout for weeks and not get a response!!! That would make it a much harder decision. I definitely would not just dismiss the GPs concerns though.
Drugs vary so much from person to person
"The side effects of memantine are less common and less severe than for the cholinesterase inhibitors. They include dizziness, headaches, tiredness, raised blood pressure and constipation."

 

[Spamar]

If they come off memantine, should be done gradually, as Raggedrobin said. The consultant stopped OHs donepezil and memantine, muttering that the number if TIAs would go up. They ready had, so no opinion on that one! However, he went into a care home the following week and died 3 months later - nothing to do with cessation of drugs, BTW.

 

[tre]

My husband's Ebixa got reduced by mistake. He was no longer able to swallow the tablet so was put on liquid medication. The pump was dispensing but it was not until about 10 days when it suddenly clicked and righted itself that I realised it had been dispensing probably less than half the correct dose. In this time my husband's agitation and anxiety had gone through the roof but his sleepiness was unaffected. He was and remains quite sleepy but I seriously doubt this has anything to do with the Ebixa. Now the pump is dispensing properly his anxiety is less but he is not back to where he was.
Our Gp liases with the consultant. Maybe your GP could do this and get a quicker response than your waiting for a consultant appointment. It is so difficult with this illness to tell the difference between a side effect of the meds and a progression of the disease.

 

[thebes]

It is a hard one for sure. We have no contact with the memory clinic. In this area you are discharged, as soon as diagnosed and settled on medication, back to GP care. So to get back to a consultant he would have to be referred again by our GP, which would indeed take months. One of the consultants does come every couple of months to our local support group to make sure there is some availability to those of us caring for AZ relatives at home, as he said it is all about resourcesand they have focussed on early diagnosis and treatment.
I know I am not alone in feeling very isolated when faced with these decisions, the local professional support is very thin on the ground and overstretched, the answer to most queries is to signpost me to another resource which so far has not resulted in the informed advice I have needed. Thank goodness for TP.
I will have to go on giving this very serious thought, all through this illness the impact has been worst on his physical health. Thankfully he does not have many of the behavioural issues that trouble others. I do feel that it is a choice between bad options, either risk worsening or new AZ symptoms, or have him too tired to do anything except sleep.

 

[esmeralda]

Thebes, I am very sorry to hear of your husband's changed presentation. I can't give you any advice re the meds because my husband isn't on any, but I can absolutely sympathise with how you are feeling. Our life together with regard to being able to go out and share activities has become increasingly limited and this is quite isolating and very sad. It's a big adjustment to have to do everything on your own, and I know this probably isn't what you would choose, but I hope you have been able to find something you want to do with your respite time.
Sending you lots of love and a big hug, and hope something gets sorted out which will improve things.
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[thebes]

Thebes, I am very sorry to hear of your husband's changed presentation. I can't give you any advice re the meds because my husband isn't on any, but I can absolutely sympathise with how you are feeling. Our life together with regard to being able to go out and share activities has become increasingly limited and this is quite isolating and very sad. It's a big adjustment to have to do everything on your own, and I know this probably isn't what you would choose, but I hope you have been able to find something you want to do with your respite time.
Sending you lots of love and a big hug, and hope something gets sorted out which will improve things.
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Thanks for your thoughts. How are things with you, I hope settling down at home now. Do you get the carer support etc that you feel is needed at this point for you both? Here in London it is a worry that the cap on housing benefit is hitting the low paid very hard, one of our carers left last week as she can no longer work out how to make ends meet and has bee rehoused after eviction, into a very rough area where she is frightened for herself and her son. Our main carer was in tears yesterday as they find they are starting to run up debts trying to manage. Not sure what the answer is as the care agencies are squeezed by the local authoritative when they tender for the contracts. And the councils in turn are still having to cut back. No one seems to worry about how it is going to work if all the low paid carers stop!
Overnight it has dawned on me that of course it is not either he is less sleepy off the pills or more sleepy on them, but that stopping them may well mean he stays just as tired but also his other symptoms get worse. He is still so much the man I love I just want the best for him, which I know in his mind includes staying at home with me. So my needs have to come on to the calculation somewhere in finding a solution that helps us keep going for as long as we can. I am not ready to face him not being at home.
I am glad to say that the GP also changed my painkillers yesterday and thank goodness they seem to be working on the arthritis, being in pain and tired has not been helping!
Love to you and yours and let's hope all of us have a reasonable day ahead. I am looking forward to lunch with a friend who I rarely see, who is travelling miles to visit, should be a very good day.
Sue xxxxxx

 

[esmeralda]

Hope you enjoyed your lunch thebes, friends are incredibly important aren't they, and she sounds like a good one. I'm glad you have found something to make you feel better. It's hard to cope and be cheerful when you're in pain.

What an awful situation with your carers, it's so wrong that people who are working hard and trying to do a good job can't even make a living. I haven't sorted out regular carers yet, just have a couple who come in if I'm going to be out for longer than a couple of hours. I'm still not sure about carers coming in regularly e.g. to get Nick up. We have quite a good routine at the moment but I do get very tired doing everything myself. Wish we had a dedicated sw but I think I'd have to start again if I rerefer. Also I have a problem with the hoist, the wheelchair has to go over one of the 'feet' - it's a gantry hoist so is very large. I can just about get the wheelchair over it but think it will post a health and safety hazard to paid carers. Oh well, I'll work something out eventually.
Hope your day was lovely and you have a peaceful evening. Love, Es
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