Impact of drugs?

[annesharlie]

We are waiting until Ron is assessed by the dementia team at UBC before he starts on drugs. Ron's mom, understandably is distraught over the diagnosis and actually spent the day in emergency with chest pain, tightness etc, which ( I gather) was a panic attack. Anyway, her own kind GP, after hearing news of Ron's diagnosis, told her there have been a few cases of Doctors having to stop practice because of dementia, but after some time on Arisept have been so reversed that they could work again.

What I want to ask is this - does the drug actually improve things that drastically? ( Ron is diagnosed in the moderate stage) I thought it was more that it slowed the progress, and we could expect a slight improvement at most. I have thoughts that the GP wanted her to feel calmer, have hope, ease her mind, so he said these things to her. I said to her that we will leave it to the experts to decide, they may choose a different drug to Aricept, depending on where they feel the damage in the brain is happening.

Again, I'd love your stories on if and how much medications actually helped.

Anne

 

[Skye]

My husband John was prescribed Reminyl (galantamine) at an early stage. The improvement was dramatic, and he was able to perform as normal (including driving) for a further three years.

But you have to bear in mind that different people react differently to these drugs. Some cannot tolerate them at all, others tolerate but show little improvement, still others show little improvement but the progression is slowed.

There's absolutely no way of telling without trying them.

Good luck

 

[Grannie G]

I`m sorry Anne, but both Reminyl and Aricept were no use whatsoever to my husband.
He tried both, and both had the same side effects, immediately----dramatic and frightening hallucinations, both visual and auditory.
He has begged to retry them, but the consultant thinks it would be dangerous.

 

[SusanR]

Impact of drugs

Anne, you certainly do not want to jump right to the end - try any and all medications. I do not know if the Reminyl slowed the progression or not, however, we did add Namenda two different times with horrible results. It put him in an immediate downward spiral from which he never recovered. The doctor at the nursing home just prescribed it again and I refused it. I even questioned why he would prescribe it at the nursing home. Good God, I don't want Rich better there and getting ornery about being in a nursing home. He is content and safe, which is all I can give him. I told the doctor that if Namenda would cure him and bring him home, then bring it on!!!!!

Take care.

Susan

 

[cris]

Anne. My wife was about 53 when she was prescribed aricept. I think there was an improvement, all but a small one. But i think the progression was slowed down. Again everyone is different, everyone is affected different, and how can we assess when we do not have the knowledge of what would happen without the drug. We cannot evaluate the same person with and without.
Susan my wife is now 59 and still on aricept.
Cris

 

[twink]

My husband was on the lowest dose of Exelon and that didn't make any difference to him at all so they put him up to the highest dose and that didn't so the psychiatrist told me that there was no point him being on it and took him off. That was ok by me, they know best and it was just another drug on top of the many he was taking. It would have been great if I'd seen some improvement at all when he was on it but there wasn't any.

Sue

 

[connie]

Did Lionel improve on Rivastigmine (Exelon)? Hard to say. Did it stabilise him?, again hard one to call.

As I do not know how he would be if he had never taken the drug, no definitive answer. He felt better just knowing he was taking something for the illness. We tried to enjoy our life, whilst it was there, never givig up until something proved too much for both of us.

Remember "today is as good as it is going to be".

Really hope the meds. work for Ron. Much love,

(P.S. he is still on Exelon 5 1/2 years later.

 

[katherine]

my mum has been prescribed both aricept and ebixa. they both improved things but for a short time - i think with the ebixa it seems to have only helped for a couple of months at best - then things started to go down hill again rapidly - but the aricept did seem to help. not to the extent where mum could have gone back to work but i know she felt happier and more settled on it...
i hope things are ok for you
take care
kate

 

[Margarita]

Is your mother still on ebixa how long has she been taking it ?

I know every one different , but I did see a good improvement in my mother , she has been on it for 5 years and never had any other type of AZ drug

 

[Grommit]

My wife Jean was on Reminyl for about 18 months with no clear signs of stabilisation. Since she has been on Ebixa, the aggression and distress have subsided. She has been on Ebixa for about 18 months now.

 

[scarlett]

my mum was diagnosed November 2003 age 56 and started aricept in the april. The difference was amazing it gave her her life back and gave me my mum for an extra valuable 18 months. Before having it she needed to be prompted to use toilet as would forget and become constipated and need enemas, she did not know how to put tights on and looked anxious and worried all the time that people thought she was stupid. with it we could go shopping, to hairdressers or for lunch and mum would go up 3 floors to toilet on her own at one cafe, and wash hands and do hair too before she came back! Her mini mental score improved from 16 to 24. Sadly tho it does not continue to work long term and she gradually detriorated until 18 months later the aricept was stopped as no noticeable benefit and actually appeared to be making her agitated. she has also greatly benefitted from QUETIAPINE which removes her paranoia and aggression but doesnt sedate her. Without it she has no peace. hope this helps.

 

[KenC]

Hi annesharlie,
I was diagnosed with the early signs of Dementia with Lewy bodies in 2003 and was later offered Exelon. Although I honestly did not expect any change, I was surprised.
The Doctor did say it was worth me trying this drug as she thought it would help. It did work for me and made my brain a lot clearer so I could think a lot better. But every one is different. We just have to wait and see what happens.
But what is more we have to hope that medication is given to all who need it from now on.

Best Wishes

Ken

 

[Lonestray]

My wife has had no medication for her Alzheimers. The only medication she was given was to sedate her, though she is and has always been a very quiet person.

Other medication at the NH was for stiffness and her preasure sores. Once I took her home I stopped all medicine except for morphine untill she recovered. Over the past three and a half years she's has done fine without medication.

It would have been nice to have known there was medication for the illness, alas it's too late now, but she's still with me after about twelve years with AD.
Padraig

 

[annesharlie]

Thank you all for taking the time to respond. Each story and case is so different to the next. We go on Tuesday to UBC for the expert opinion. This is Canada, and a public health care system, Ron was first diagnosed on April 4, and it's only now he's seeing the top specialists.
I go with fear as I hate all these cognitive tests, it's so hard to watch.


Connie, what you say about today being as good as it's ever going to be is such a hard reality and for me right now that's the difficulty - this realization of the horror of the disease sinking in, and that things are only going to worsen. It's rough, I can't think too far ahead...

a

 

[jackie1]

I think we were lucky in that we got a fairly early diagnosis, after many emotional phones call from me and John was put on Reminyl as soon as he was diagnosed. I guess it is working as there has been no major deterioration since the diagnosis. But there are been no improvement either.