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Advice on memantine

Help!

Registered User
Sep 23, 2019
51
Is there anyone who has had a bad experience while on this,as my dad has lost the ability to walk or lift himself up from chai r and balance his feet on ground when seated and hold himself forward to eat dinner I wonder what else has caused this when doctor has said he's not advanced to be having joint freeze and contractures cos also in bed his legs lock in bent position all night ..up until January until he was on this drug he hadn't had any of these problems ..I think it's caused this and damged can not be reversed.am not getting any help really with GP die to having no appointment s and only call conversation she also dismisses his swollen right foot as being seated more but I want to know whats caused him to be able not to walk or hold himself steady ,he's so uncomfortable now sitting in his chair.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,387
Nottinghamshire
My concerns regarding the effects of Donepezil on my dad were initially dismissed by his GP as very unlikely to be a side effect of the drug. I know nothing about memantine but I think it’s worth being persistent if you think it’s causing problems.
I did my own online research and discovered that dads new behaviour was a rare (1/1000) side effect of the drug which made me determined to get the problem rectified. Dad was on the higher dose of his drug for 6 months but his problem disappeared almost immediately when his dose was reduced again so hopefully your dad’s condition will improve if it is caused by memantine.

Once the doctors accepted that it could be causing problems they were willing to work with us to find a solution. I hope this helps.
 

Help!

Registered User
Sep 23, 2019
51
Thankyou. I made the decision to stop it last night. Also like you reading on line of others reaction to this ,it did surprise me that the doctor dismissed my concern that it could be the drug I have also read that any damage it has caused cannot be reversed ..I pray that my dad gets some movement back in his legs as yesterday he just couldn't settle his feet down and is a constant on edge position..for all this to change from how he was before the drug I keep on insisting it must be the cause.
 

Louise7

Registered User
Mar 25, 2016
2,047
When did your dad lose his ability to walk? Has this come on suddenly, and recently? If this happened at the same time as starting on the medication in January then it may be connected to that but if it is more recent it may be due to an underlying health issue like an infection or something else that would need checking out. Is it possible that your dad is in pain? Also, it's not advisable to stop medication suddenly without medical advice so do speak to the doctor as soon as you can to let them know that you have stopped the memantine. The older adults mental health team may be able to consider alternative medication if the doctor makes a referral.

Edit: Just to add that I think the swollen foot needs a proper check over, particularly as he can't settle his feet down and is constantly on edge when positioning - this could indicate that the foot is causing him pain and preventing him from walking properly.
 
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Baker17

Registered User
Mar 9, 2016
493
Thankyou. I made the decision to stop it last night. Also like you reading on line of others reaction to this ,it did surprise me that the doctor dismissed my concern that it could be the drug I have also read that any damage it has caused cannot be reversed ..I pray that my dad gets some movement back in his legs as yesterday he just couldn't settle his feet down and is a constant on edge position..for all this to change from how he was before the drug I keep on insisting it must be the cause.
My husband was on that medication, when the dosage was increased he did not react well to it. I rang the memory Matters clinic who had prescribed, the GP did not prescribe it, they advised to decrease the dosage slowly as stopping it completely suddenly could have a bad reaction. I did this over the period of one month and he suffered no side effects. I would advise you to speak to whoever prescribed it before stopping yourself.
 

Woo2

Registered User
Apr 30, 2019
1,726
South East
Can I add that I also stopped this from my PWD , not gradually but just stopped it and the results were devastating , I very quickly restarted them. I am not saying your dad’s decline isn’t the medication but I do agree with @Louise7 that I would of thought that would of happened before now but I wouldn’t rule anything out , please do consider staying on it until you can speak to Gp or mental health team . Hope you get some answers soon.
 

Karladaisy

Registered User
Apr 16, 2020
16
My grandads been on this since December he was on a mental health ward they slowly upped his dosage to 20 mg he lives with me and is slowly loosing the ability to walk his leg just gives way he uses a frame to get about and is started to fall weekly. He is at the point where he need something to ease his agitation waiting for mental health to get in contact.
 

Help!

Registered User
Sep 23, 2019
51
Thankyou everyone .This is why I thought it odd the doctor when I spoke to him 20th April had said he doesn't think it's the drug and made no suggestion of any other only that he will phone back in July which is his next 3monthly appointment..the walking suddenly stopped February and then he was given antibiotics for a chest infection and his walking improved but in march he couldn't again and when I rang the doctor to advice she would not perscribe anymore and I couldn't get him to the doctor which resulted calling ambulance to hospital and he had two different antibiotics but hadn't improved his walking and then his foot started to swell and I had a over phone call to doc and it's his right foot and he said it's where he's sitting and nothing to worry about ..so again I rang the doctor Monday to ask for something to help his legs from locking and help his feet but she she didn't want to risk it with memantine and to spk to memory clinic he said he needs physio and again said nothing to do with drug and also he shouldn't be experiencing locking legs and balance yet in this stage he is late but no so to be having this he said. I have taken 2 urine samples to doc since march both they say are clear ..I just don't know what to do. So now I'm panicking that I am doing more harm stopping them .but he just is not the same as he was January middle February.
 

Help!

Registered User
Sep 23, 2019
51
Also with no doctors visiting patients and surgery closed I can't get his foot properly checked. I feel so sorry for him he knows he just isn't right and is so uncomfortable.
 

Palerider

Registered User
Aug 9, 2015
1,682
North West
Thankyou everyone .This is why I thought it odd the doctor when I spoke to him 20th April had said he doesn't think it's the drug and made no suggestion of any other only that he will phone back in July which is his next 3monthly appointment..the walking suddenly stopped February and then he was given antibiotics for a chest infection and his walking improved but in march he couldn't again and when I rang the doctor to advice she would not perscribe anymore and I couldn't get him to the doctor which resulted calling ambulance to hospital and he had two different antibiotics but hadn't improved his walking and then his foot started to swell and I had a over phone call to doc and it's his right foot and he said it's where he's sitting and nothing to worry about ..so again I rang the doctor Monday to ask for something to help his legs from locking and help his feet but she she didn't want to risk it with memantine and to spk to memory clinic he said he needs physio and again said nothing to do with drug and also he shouldn't be experiencing locking legs and balance yet in this stage he is late but no so to be having this he said. I have taken 2 urine samples to doc since march both they say are clear ..I just don't know what to do. So now I'm panicking that I am doing more harm stopping them .but he just is not the same as he was January middle February.
Hello @Help!

Just been catching up on your thread and I can see you are very concerned. As others have said don't just stop the memantine, that can have bad effects as well. There are a number of reasons why your dad might be having this current problem, unfortuantely I can't advise, but what I will say is that you are clearly concerned and given the GP has not assessed your dad physically I would call 111 with a view to getting him checked over. It might be that he has hypertonia which could be due to the memantine, but equally it could be something else. There are very rare occurrences of neuroleptic malignant syndrome (NMS) and I would raise this if you speak to 111. In the absence of your dad being assessed physically it possibly warrants more investigation sooner rather than later if anything to ensure he is not in pain or discomfort -which seems also to be a concern.
 

Help!

Registered User
Sep 23, 2019
51
Thankyou for your advice. It is such a worry as I keep trying to find a solution but feel as tho the doctors act like it's is what it is but I just feel there is more to this.
 

Louise7

Registered User
Mar 25, 2016
2,047
We were in a similar position with mum a couple of years ago @Help! No thorough clinical evaluations were being undertaken, everything was deemed to be due to 'dementia', and a fractured spine was missed as a consequence! If you feel that something is wrong go with your gut instinct. You need to keep persevering and I agree with @Palerider, I'd call 111 to get the foot properly checked out, not leave it and risk it getting worse.
 

canary

Registered User
Feb 25, 2014
12,259
South coast
Im trying to work out the time line for the memantine and loss of mobility.

You said that he had been taking memantine without any problems until January. Then in February he suddenly lost mobility, but he was found to have an infection and after a course of antibiotics he regained mobility. Then in March he lost mobility again, but antibiotics made no difference and no reason for the mobility loss has been found.

Is this right?

I must say that this really doesnt sound like a side effect of memantine. Side effects of drugs usually start at the same time as starting the drug
 
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Louise7

Registered User
Mar 25, 2016
2,047
Im trying to work out the time line for the memantine and loss of mobility.
Yes, I was a bit confused about that so have had a look through Help!'s previous threads and that's been helpful. It seems that the memantine was started in mid-January. Dad was previously on donepezil but this was stopped by Help! due to concerns about possible side effects.

The memantine dosage was increased in mid- February but stopped by Help! as dad had ‘had a funny turn’ 2 days after the dose was increased, with head/neck ache and his legs gave way – he was unable to balance himself and could only shuffle his feet. The doctor advised at that time that it was doubtful that this was connected to the memantine and was possibly due to a minor stroke or the dementia but couldn’t be sure without an MRI scan. At the same time dad was found to have a chest infection so was prescribed anti-biotics with the GP suggesting hospital admission if no improvement. There was a bit of an improvement. Memantine was started again but dad’s mobility has got worse – legs locking up and a swollen foot. Discussed with the GP last Tuesday who again advised it was doubtful that the memantine was causing the mobility problems and mentioned physio. The GP didn’t want to change the medication until the matter had been discussed with the memory clinic but Help! stopped it again last night due to concerns that it was causing the problems.

@Help! I understand your concerns about possible side effects but as has already been suggested, you really need to stop stopping your dad's medication suddenly, without letting the doctor know, as memantine (and a lot of other medication) needs to be withdrawn slowly.

Has your dad had an MRI scan since his 'funny turn' in February, to check whether he has had a stroke? The chest infection could also have caused a deterioration in mobility and a general decline in his dementia which won't improve. It sounds as though the GP is arranging for physio - are they going to contact the memory clinic or are you going to do this? Please think about getting the swollen foot properly checked out via 111 particularly as it is making your dad so uncomfortable.
 

Help!

Registered User
Sep 23, 2019
51
He started to become slower whilst on memantine in the ist couple of weeks and then was having neck pain I asked the memory doc if this had anything to do with the drug he said he doubt it then in february his legs gave way we went to the GP for checkup and she couldn't see anything that could be causing it and maybe a chest or urine infection and perscribed antibiotics he managed to walk again for about a week then again couldn't so we thought maybe if urine or chest the 5day course hadn't cleared it but as I couldn't get him to the surgery this was begining for march before lockdown could she perscribe more but she wouldn't so he ended up in hospital where he was given more for chest once home he started again to walk bit better ,with frame but then gradually again from April it was becoming less till end of April not at all again and harder to lift himself up with help from chair so now he can't walk at all .also aswell when in he was loosing the ability to walk and with pains the memory doc said take the lower dose 10 ..which he is on and when I called GP about the foot ,different doctor said it's due to sitting and not moving ..so since may he has started to having his legs lock in bed and not able to balance his feet when seated and on edge all the time which I told him just Monday and he said he may need physio and GP said no one will come out and he can't go anywhere .so really all I'm aware of is that in January when he prescribed this drug our dad was able to get up even when he was a bit slow he never used frame and would be up and down all the time his bed was upstairs he walked the stairs few times daily till when in February we had to bring the bed down. I just find it all very odd that change happend once he started them and also with eating he's become very picky can't hold spoon properly finds it hard to sit up straight to eat dinner. So I am not really geting the reason behind any of this from either doctors. my reply is to all responses thanks.
 

Help!

Registered User
Sep 23, 2019
51
Also aswell out doctor the ist time when had apointment said we can stop them at anytime and I spoke to the doctor and told him and that's when he said maybe just keep him on the ten and start on 5 ..so then as times gone on his legs have gone again and i could only get appointment with foot over the phone and I called the memory doctor just this Monday and told him everything's that's happening and he said still not the memantine there has been no suggestion of trying another drug I feel like I am the one making suggestions but they get dismissed.also aswell when we ist went for a checkup over his legs and she put reasons it could be I said could it be the memantine as he was walking fine before all this she said just stop them if you feel they are not making a difference ,so I said well they are not he sleeps most of the day which he wasn't doing before and awake of a night so I haven't really done it without telling them no advice was given to stop slowly.
 

Louise7

Registered User
Mar 25, 2016
2,047
I called the memory doctor just this Monday and told him everything's that's happening and he said still not the memantine there has been no suggestion of trying another drug I feel like I am the one making suggestions but they get dismissed.also as well when we ist went for a checkup over his legs and she put reasons it could be I said could it be the memantine as he was walking fine before all this she said just stop them if you feel they are not making a difference ,so I said well they are not he sleeps most of the day which he wasn't doing before and awake of a night so I haven't really done it without telling them no advice was given to stop slowly.
I've found from experience that it's best to discussion medication problems with the person who prescribed it otherwise it can result in problems. If the memory clinic have advised you that it isn't the memantine that is causing your dad's mobility and other problems, and the GP has said that you can stop giving it to your dad if you don't feel that it is making a difference, hopefully someone has let the memory clinic know that you have stopped giving it to your dad? Medication like donepezil & memantine helps to control symptoms of dementia but if stopped suddenly you're likely to see a noticeable decline.

Does your dad have alzheimer's? Donepezil & memantine are the two main medications available but if you don't think that either of them are good for your dad, and the memory clinic doesn't feel that another medication would be appropriate for him to try, then they won't prescribe it. I think you mentioned in another thread that your dad has heart problems and high blood pressure so this also has to be taken into account when prescribing other medication.
 

White Rose

Registered User
Nov 4, 2018
558
I must say that this really doesnt sound like a side effect of memantine. Side effects of drugs usually start at the same time as starting the drug
Hi @canary, I've been reading this thread with interest because the GP has decided that my partner, after being 4+ years on Donepezil should be switched to Memantine because the Donepezil isn't helping anymore. Bit scary to read about the loss of mobility and obviously I'll keep an eye on side effects when he starts but with your experience do you think it's even worthwhile changing to Memantine? I forgot to say the reason for switching is also because of his increasing anger and anxiety.
 

canary

Registered User
Feb 25, 2014
12,259
South coast
do you think it's even worthwhile changing to Memantine?
I think its best to go back to the GP and ask more questions. My mum was on donepezil right up to the end, but I know that many doctors think that in the more severe stages memantine works better. It also has a calming effect, so its often used for people who can be a bit aggressive.

Loss of mobility goes with the later stages of dementia - it is part and parcel of the condition, so sometimes its difficult to tell if s symptom is just progression of the dementia or due to something else.