Risperidone

[Baker17]

I have been contacted by my husband’s care home to say that the GP has been to see my husband and has prescribed Risperidone for his agitation and several instances of verbal and resistance during personal care, this has only occurred since lockdown and me not being able to visit. The CHESS team and social worker are both of the opinion that the lockdown has had a physiological effect on him leading to this new behaviour. Throughout the lockdown the CHESS team have become involved with him due to these issues and me, the CHESS team, social worker and someone from the home have been having regular meetings via teams to discuss him and the way forwards. Early on in the lockdown the home were keen to medicate with this drug. The CHESS team are not in favour of this because of the risk of falls and to quote “ the person you know as your husband will not be recognisable” . I asked the home what the dosage will be but they said they don’t know, I’ve left a message for the GP to phone me to discuss things with me and have also e mailed the CHESS team and spoken to his social worker. She in turn has spoken to the home and they’ve said that if it’s prescribed they are legally bound to give him it. I don’t have H and W LPA but this has never been a problem in the past with all the various medical people I’ve had to deal with in the past few years of my husband’s illness.
I am just wondering what experiences people have had when their loved ones have had to be prescribed this medication. Thanks x

 

[Andrea57]

My mum has been on this now for about 3 months she was monitored very closely during the change over from olanzapine which wasn't working for hallucinations, paranoia it was very rocky road to start with but it has made her calmer .she had declined but that could be the progression of the dementia. Wishing you all the best.

 

[Shedrech]

hi @Baker17
dad took this med to help manage his agitation as he could spiral into a truly awful state .... it certainly seemed to help him (I only say seemed as it's so hard to say anything certain with dementia) and did not make him lethargic (or whatever the CHESS team mignt mean by what they say ... which to me sounds an unhelpful description) ... indeed he appeared more levelled out which meant he felt better in himself

I appreciate each person reacts individually to meds, and dosages and timings may need tweaking to find the optimums .... personally, with dad, I decided to try any suggestions and check he was being carefully monitored (easier before lockdown, I know) in the hope any new med might help, but ready to ask for it to be withdrawn if I saw any negative reactions

 

[Baker17]

My mum has been on this now for about 3 months she was monitored very closely during the change over from olanzapine which wasn't working for hallucinations, paranoia it was very rocky road to start with but it has made her calmer .she had declined but that could be the progression of the dementia. Wishing you all the best.

@Andrea57 thanks so much for replying, there is some progression of his dementia it’s evident during my window visits and I know his dementia will only get worse as does everyone’s unfortunately. I’m keeping my fingers crossed that I have the same result as you and your mother, take care x

 

[Baker17]

hi @Baker17
dad took this med to help manage his agitation as he could spiral into a truly awful state .... it certainly seemed to help him (I only say seemed as it's so hard to say anything certain with dementia) and did not make him lethargic (or whatever the CHESS team mignt mean by what they say ... which to me sounds an unhelpful description) ... indeed he appeared more levelled out which meant he felt better in himself

I appreciate each person reacts individually to meds, and dosages and timings may need tweaking to find the optimums .... personally, with dad, I decided to try any suggestions and check he was being carefully monitored (easier before lockdown, I know) in the hope any new med might help, but ready to ask for it to be withdrawn if I saw any negative reactions

@Shedrech thank for your reply, I’m very fortunate that I have the support of my CHESS team, I sometimes think they must spend most of their time on my husband’s case! Take care x

 

[RosettaT]

My OH has been on Risperidone for almost 2 yrs and it had no detrimental effect on him mentally he is still my beautiful and caring man and certainly not 'unrecognisable'.
However he has just this week had a review by the hospital's Care of the Elderly and the consultant is weaning him off it because he is suffering rigidity of his limbs and joints. The guidelines say it shouldn't be given for more than 8 weeks so I would question how long they intend for him to be on it.

 

[Baker17]

My OH has been on Risperidone for almost 2 yrs and it had no detrimental effect on him mentally he is still my beautiful and caring man and certainly not 'unrecognisable'.
However he has just this week had a review by the hospital's Care of the Elderly and the consultant is weaning him off it because he is suffering rigidity of his limbs and joints. The guidelines say it shouldn't be given for more than 8 weeks so I would question how long they intend for him to be on it.

Hi @RosettaT thanks for taking the time to reply, I have spoken to the GP today and he has told me this will not be prescribed indefinitely and the dosage will 500 micro grams twice a day. He said it’s just to get him through this difficult time while I can’t visit. That’s interesting to know it shouldn’t be prescribed it shouldn’t be prescribed for more than 8 weeks I’ll make a note on the calendar to ask questions just before then x

 

[RosettaT]

It worked miracles for my OH, one of us would have ended up in a home and I wasn't certain it would have been my OH. However last year I asked 2 hospitals and my surgery and the mental health nurse about taking him off it but they weren't interested, all advised against it but now I wish I had demanded a second opinion.

 

[Baker17]

It worked miracles for my OH, one of us would have ended up in a home and I wasn't certain it would have been my OH. However last year I asked 2 hospitals and my surgery and the mental health nurse about taking him off it but they weren't interested, all advised against it but now I wish I had demanded a second opinion.

@RosettaT can I ask what dosage your OH was on please? x

 

[RosettaT]

Sorry Baker 17 only just seen your question. He was on .5mg for 2 weeks then increased to 1mg, which he was on for 2yrs. He has now been on .25mg for a week and after tomorrow nothing. So far so good, his movement is much better with no signs of anxiety or upset.

 

[Baker17]

Sorry Baker 17 only just seen your question. He was on .5mg for 2 weeks then increased to 1mg, which he was on for 2yrs. He has now been on .25mg for a week and after tomorrow nothing. So far so good, his movement is much better with no signs of anxiety or upset.

@RosettaT thats no problem, unfortunately it has not lessened his aggression anger or anxiety and there have been several serious incidents. I have seen him twice through the window and he seemed spaced out and unfocused. Today the chess team are going back in and they are going to speak to their mental health consultant about what to do, I’ll admit I wasn’t happy about the homes GP just prescribing it without input from the consultant as he had always been involved in his medication. They said he might have to go to an assessment unit to get the meds right, I really do hope this hasn’t got to happen but I can only wait and se because they will make a decision tomorrow.

 

[Karladaisy]

My grandad father has just started this we are on week 1 and hes on 0.5 mg he has had 2 days with behavioral problems and hallucinations on week 2 it will be upped to 1. Mg so I will see if it works then.

 

[Karladaisy]

Update day 9 he is still restless , agitated and halluincatting. Constantly wanting a drink every 20 minutes I was out of the room and left him with one to come down stairs and hes blown the kettle as it had no water in it. First day of 1 mg

 

[heartsore]

My husband was put onto Risperidone 3-4 months ago.. It has made a significant difference. He started with .5 mg per day and now on 1mg per day... I figured that any side effects are worth a calmer mind.

Placing him in care on Monday has been truly horrible.. It is a kind home with trained staff, but leaving him there has devastated me. I was warned that he would deteriorate , due to the trauma of separation from my self and his loved home, but I had got to the stage of major carer burnout and collapse.. So I feel that I have sacrificed him , and failed to continue caring for him... It is so sad . What a horrible disease this is.. One day at a time

 

[LadyA]

My husband was on risperidone for over 4 years, to deal with his terrifying hallucinations/delusions and extreme paranoia. It worked extremely well for him, and he thankfully suffered no side effects at all. He was on 1.5mg of Risperidone. He was also on Trazodone, Exelon patches and eventually, Ebixa . Have to say, it didn't make him drowsy (tbh, there were times I used to wish!), all it did was quiet down his awful agitation and anxiety. It was a lot of meds for him (considering before he became ill, he wouldn't take so much as a paracetomol!) but it was felt that desperate times called for desperate measures. I had full confidence in his consultant though, because he had (still has) the reputation of only using medication as a last resort, and he did try, for a few hair=raising months, to help my husband without resorting to medication. The medication regime gave my husband just over two good, contented years at home that wouldn't have been possible without it.

ps. Just to say, use of risperidone needs to be carefully monitored. My husband was reviewed firstly every week, then every 6 to 8 weeks.

 

[LadyA]

I was warned that he would deteriorate , due to the trauma of separation from my self and his loved home,

Heartsore, this is not exactly true, for a couple of reasons. Firstly, I found, when my husband had to go to full time care, that actually, far from deteriorating, he positively thrived for several months! (you can imagine how that made me feel!). He gained weight, he was clean, he was far more stimulated with other people around and with plenty of staff to help him. He was eating and drinking more, because of the stimulation of a dining room setting, with lots of others all having meals. It was like a restaurant. Secondly, your husband (and I don't mean to sound callous or cruel in saying this) will not deteriorate because of the separation from you and his home. He will deteriorate because dementia is a progressive and ultimately terminal illness. It's a one way street, and there could be no turning back from the time he first developed the very beginnings of his illness. Not Your Fault . There was absolutely nothing you could do to alter the course of his illness. He may, naturally, be a bit disoriented for a couple of weeks, but any of us would be in a new place.

It's a horrible, traumatic time for you. But, you will get through it. xx

 

[Jayne M]

Heartsore, this is not exactly true, for a couple of reasons. Firstly, I found, when my husband had to go to full time care, that actually, far from deteriorating, he positively thrived for several months! (you can imagine how that made me feel!). He gained weight, he was clean, he was far more stimulated with other people around and with plenty of staff to help him. He was eating and drinking more, because of the stimulation of a dining room setting, with lots of others all having meals. It was like a restaurant. Secondly, your husband (and I don't mean to sound callous or cruel in saying this) will not deteriorate because of the separation from you and his home. He will deteriorate because dementia is a progressive and ultimately terminal illness. It's a one way street, and there could be no turning back from the time he first developed the very beginnings of his illness. Not Your Fault . There was absolutely nothing you could do to alter the course of his illness. He may, naturally, be a bit disoriented for a couple of weeks, but any of us would be in a new place.

It's a horrible, traumatic time for you. But, you will get through it. xx

This absolutely echos my experience of my dad going into a care home. It was the thing he dreaded the most, but he's been there now since the end of June and is safe, comfortable and engaged. The staff love him and he thinks he's on a cruise with my mum, who died last year! He's doing so well because he is in the righr place to meet his needs.