Rivastigmine question : Rivastigmine... - PSP Association

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Rivastigmine question

SewBears
SewBears

Rivastigmine improves mental function (such as memory and thinking) by increasing the amount of a certain natural substance in the brain.

My husband is using the Rivastigmine patch. For 5 months he was taking 4.6, the lowest dosage. For 7 months he took 9.5 (mid dose). Now for the last 2 and a half weeks he’s on the highest dosage of 13.3.

With each increase in dosage he improves from not being able to speak or dress himself to being able to have a thoughtful meaningful conversation and he can even dress himself again. It’s like a miracle drug! Now that he’s on the highest dosage available and I’m witnessing the improvements, I often wonder what will happen when his body builds up a tolerance again. I’m hoping for another good 7 months, or maybe even 9. I know that I am supposed to live in the moment and I try to practice that everyday. I’m wondering if others have been through this and what happens after 13.3 no longer works? Do you know if they try other meds or does the patient go back to infancy stage? I also know that no two people are alike and what works for one might not work for someone else. I’m just looking for other people’s experiences. Anyone?

Thanks,

❤️ SewBears

15 Replies
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Hi SewBears,

I have no advice on Rivastigmine; Rod tried Donepizil and Quetiapine, neither of which had any beneficial effect, but as you said, different drugs work for different people. The great thing is that your hubby is getting noticeable results from the raised dosage of Riva, so time to make the most of and enjoy the current situation and long may it last. Don’t think about the ‘what if’s’ - just get on with enjoying ‘the now’, which I know you always try to do anyway.

Love Hils

x

bazooka111
bazooka111 in reply to HilsandR

I wonder if I should suggest trying this for Mom to our Neuro? Hmmm - We also had Leavodopa right before diagnosis and it didn’t do anything for Mom. Nothing else has been offered or even suggested to us. 😞

HilsandR
HilsandR in reply to bazooka111

Hello Kim

No harm in having the conversation with your mom’s neurologist, especially around managing any new symptoms, just to check out if there is something out there that may make her life easier along with yours. Even a small amount of respite of symptoms is a bonus but I suppose the prescribing doctor always has to weigh up the pros and cons.

Enjoy your day.

Love Hils

X

bazooka111
bazooka111 in reply to HilsandR

Well then, I think I will ask. Xo Kim

Glad it's helping your husband out, it did nothing for Anne when she tried it.

When Rod was first diagnosed with PSP the neurologist prescribed Levodopa to completely rule out Parkinson’s. If he did in fact have Parkinson’s then Levodopa would be really beneficial. Two days in with taking them I saw him sprint up the stairs like an athlete - his usually slow and stooped gait completely upright. Maybe this was the placebo effect or maybe, just for a moment, the drug fired up the dying embers, but two days later he was back to square one. He stayed on the drug for a couple of weeks just to give it a chance to show some benefits but it was a case of hopes raised only for a big disappointment. Some folks definitely get some relief from certain drugs but sadly it is short term as the disease progresses.

Hils

x

SewBears
SewBears in reply to HilsandR

Leva works great for hubby. He’s been on it for a year now. With this drug we’ve also increased the dosage a lot since he first started taking it. I’m so thankful that it helps! Right away his shuffled gait improved. He had reached the point of not being able to get out of bed due to stiffness. He couldn’t bend at the waist at all. On Levodopa he’s able to walk and move around again. As the drugs buildup in his system and he begins to decline again I feel like I’m living in a horror movie. I know in my heart that I’ve bought him some extra time, but at what cost. When is enough, enough? 😢

❤️ SewBears

HilsandR
HilsandR in reply to SewBears

All the time a drug proves to have benefits and is giving hubby some quality of life then that’s the way to go, I would have done the same, it’s just that Rod didn’t really respond to anything. Your hubby may get good results for a considerable time on the higher dose, I really hope so. We have to live with all these unknowns but the key is to live and get what you can out of each day, it’s the only way.

Love Hils

xx

SewBears
SewBears in reply to HilsandR

I hear you! I’m so sorry that the meds didn’t help Rod. Sorry, I forgot to say that in my previous post. I guess my hubby has a form of Parkinson’s because dopamine works for him. Yes, I take each day as it comes. Sometimes I have to tackle the day and sometimes I can be worry free. Go with the flow... eh?

Railfan
Railfan in reply to SewBears

Not to be a downer but he could have the Parkinson's variant of PSP.... PSP-P. I've read that patients with that variant respond better and longer to Levodopa than most PSP patients. I had probably 2-3 weeks of slightly improved standing stability on Levodopa but it reverted back after that. I was on it for 6 months and was up to a dosage high enough to cause hallucinations. They subsided within 48 hours of stopping.

SewBears
SewBears in reply to Railfan

Not a downer at at all, it’s reality and I appreciate any and all information. Thank you. So far so good regarding hubby NOT experiencing hallucinations. I’m sorry that Levodopa didn’t work better for you.

Hi there, SewBears. My husband tried it last year, with no effect at all. Began with small dose but never got to higher dose. He is in an advanced stage of CBD, if indeed, that is his condition.

Marilyn

Right! We never really know what condition it is do we? I often wonder why our doctor stuck with Lewy Body and later added a subtype of Posterior Cortical Atrophy. I’ve read a lot about all of these different brain diseases and after awhile they pretty much all sound the same to me. I guess nothing is set in stone. My goal for next week is to get on with finding out all that I can about brain donation. I know that I’ve brought this up before and I really do want to know. It’s taking the steps to get there that is so difficult.

❤️

Do you feel that your husband will keep his improvements? I have started my husband on the patches he is on day 5 at the lowest dose....I can already notice tiny improvements, very slight but for sure some....

Absolutely! It's made a huge difference in that he can string more than two or three words together again. He watches and understands short YouTube videos and then he can reiterate to me what he's seen. His memory is better because he can update the day of the week on the whiteboard and he remembers the date/time. After a month on the highest dosage he can put his pants, shoes and socks on, but he still needs help with putting on a shirt. Where before, when he was on the medium dosage, he had completely lost the ability to dress at all. So yes, Rivastigmine has improved his and my quality of life.

The problem is that eventually he will build up a tolerance and I dread the day when he regresses. Living in the moment for now. Trying to appreciate what I have while it lasts.

Thanks for asking.

❤️ SewBears

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