OH on rivastigmine, now I don't understand ....help, please.

[SoyHJ]

Can anyone make things clearer for me? My OH was diagnosed with early AD at the beginning of the year ( I had known something was wrong for 2-3 years) . He spent two months on Exelon (rivastigmine) 4.5, initially in patch form but then changed to capsules. The dose was then increased to 9.5 which he has been on for almost two months now.

OH is generally fine day to day, no problems going out alone, finances etc. His problems tend to be minor memory lapses, slight confusion and occasionally a seeming inability to grasp a situation. Prior to diagnosis he'd also been very apathetic and for a while, we also went through sudden outbursts of temper accompanied by language he'd never have dreamed of using in the past. Since being on the medication his apathy has greatly improved and, at the beginning of his treatment I also thought for a while he seemed better generally. The trouble is I can see that nowadays he is having increasing problems with confusion and 'not quite grasping things' despite the medication.

I've done lots of research on all this and one of the possible side effects listed for Rivastigmine/Exelon is 'confusion'. Now I know that none of the medication can stop the course of this awful illness but can only maybe delay it for a while. This is where I'm beginning to get upset .....despite all my research I just don't understand how drugs prescribed for AD can also have a side effect of confusion! Isn't this what they are designed to try and help? If confusion is a possible side effect, what is the point in taking it? I have read that some side effects decrease after a while. How long is 'a while', he's getting worse, not better.....

OH has only been on this for 4 months now but, I'm worried and scared. I know that everyone progresses at different rates and in different ways and as I said, I know any treatment is only designed to try and delay things but, maybe stupidly, I NEVER expected him to become worse and more confused like this after 4 months of medication. I'd sort of expected that he might remain at the same level he had been at for at least a while.

We don't live in the UK and so don't have access to any kind of memory clinic and our GP tells me that, even with medication, this confusion is 'due to the illness, even though he is on medication'. Please, does anyone have any experience of confusion increasing like this after being on meds like OH has and at his early stage? I'm scared it means he's deteriorating more quickly than I expected......Surely not this quickly? He has no other infections etc which could be the cause.

 

[JayGun]

The reported side effects of a drug are all the symptoms that people on the drug have reported that they experienced while taking the drug

So if someone experienced confusion while taking the drug it will be on the list of the reported side effects, even if they have experienced confusion before.

It doesn't mean that the drug causes confusion. It just means that people taking it have reported confusion as a symptom that they experienced while taking the drug.

Some people will report backache, tummy upsets, asthma etc, but these are not necessarily caused by the drug either. They may be a pre-existing condition, or they may have done something else in their lives that caused the symptom - such as dig the garden, or eat dodgy prawns etc. They will still be added to the list of reported sued effects.

In short, a reported side effect is just a symptom that has been reported by people taking this drug. It doesn't mean that this drug causes that symptom.

 

[SoyHJ]

Thanks for putting it like that, Jaygun. It's an angle I hadn't considered with regard to our own case. So.....quite possibly OH is deteriorating and the med isn't helping or..maybe he'd be worse without it...Just thinking out loud! I just honestly hadn't expected this. I had hoped he'd remain more or less the same for at least a while.

 

[hazelnut29]

medication

only about one in three get benefit from rivastigmine, the rest have no efeect, goog or bad,,, The confusion is part of the usual progression af dementia. You say things started to show up 2 or 3 years ago. I am not surprised that confusion is now happening. I have just re-read lots of corespondence I did re, my wife who is now in the last stages of DLB. All you say ringa a bell. I am sorry but you have to accept that things will go downhill, not all at once, but progressively.

Can anyone make things clearer for me? My OH was diagnosed with early AD at the beginning of the year ( I had known something was wrong for 2-3 years) . He spent two months on Exelon (rivastigmine) 4.5, initially in patch form but then changed to capsules. The dose was then increased to 9.5 which he has been on for almost two months now.

OH is generally fine day to day, no problems going out alone, finances etc. His problems tend to be minor memory lapses, slight confusion and occasionally a seeming inability to grasp a situation. Prior to diagnosis he'd also been very apathetic and for a while, we also went through sudden outbursts of temper accompanied by language he'd never have dreamed of using in the past. Since being on the medication his apathy has greatly improved and, at the beginning of his treatment I also thought for a while he seemed better generally. The trouble is I can see that nowadays he is having increasing problems with confusion and 'not quite grasping things' despite the medication.

I've done lots of research on all this and one of the possible side effects listed for Rivastigmine/Exelon is 'confusion'. Now I know that none of the medication can stop the course of this awful illness but can only maybe delay it for a while. This is where I'm beginning to get upset .....despite all my research I just don't understand how drugs prescribed for AD can also have a side effect of confusion! Isn't this what they are designed to try and help? If confusion is a possible side effect, what is the point in taking it? I have read that some side effects decrease after a while. How long is 'a while', he's getting worse, not better.....

OH has only been on this for 4 months now but, I'm worried and scared. I know that everyone progresses at different rates and in different ways and as I said, I know any treatment is only designed to try and delay things but, maybe stupidly, I NEVER expected him to become worse and more confused like this after 4 months of medication. I'd sort of expected that he might remain at the same level he had been at for at least a while.

We don't live in the UK and so don't have access to any kind of memory clinic and our GP tells me that, even with medication, this confusion is 'due to the illness, even though he is on medication'. Please, does anyone have any experience of confusion increasing like this after being on meds like OH has and at his early stage? I'm scared it means he's deteriorating more quickly than I expected......Surely not this quickly? He has no other infections etc which could be the cause.

 

[JayGun]

Thanks for putting it like that, Jaygun. It's an angle I hadn't considered with regard to our own case. So.....quite possibly OH is deteriorating and the med isn't helping or..maybe he'd be worse without it...Just thinking out loud! I just honestly hadn't expected this. I had hoped he'd remain more or less the same for at least a while.

My mother in law is on Aricept, and although she fought against getting diagnosed she seemed much less anxious and angry once she was diagnosed and on the treatment. She's just had her annual check up and she's only dropped one point on the MMSE test.

There is no way to tell if he'd be worse without it, but maybe your fella could try a different drug?

 

[SoyHJ]

I had known that he would progressively go downhill, Hazlenut, it's just that I'd thought the treatment might delay it a bit. I'm so sorry to hear about your wife.

JayGun, we have another neuropsych test due at the end of the summer and a followup with the neurologist after that. Perhaps I'll have to sit it out and wait and see until then. I'm glad that Aricept has helped your MIL, less anger and anxiety helps a lot. My husband also seems to get slightly less agitated about trivial incidents so I suppose that might be a positive effect of the meds.

I know I'm beginning to sound like a stuck record but I didn't expect him to show more confusion so soon after beginning meds. As Hazlenut said, maybe I will have to try and accept that this is what happens and treatment doesn't automatically work for everyone.