Dizziness with Enzalutamide - Advanced Prostate...

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Dizziness with Enzalutamide

caretkr profile image
23 Replies

Hello everyone,

My father is on 3 tablets Enzalutamide since March 2018(full history in profile), recently he is experiencing high bp 80/ 180 and dizziness whenever he is turning heads while lying down. Anybody experienced similar thing and had to reduce dose or take any medicine due to this?

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caretkr
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23 Replies
Magnus1964 profile image
Magnus1964

Everyone responds differently to xtandi. My wife tells me I am unsteady since I have been on xtandi.

caretkr profile image
caretkr in reply to Magnus1964

thats true. Good luck to you!

Shooter1 profile image
Shooter1

160 mg Xtani made me a complete invalid...cut dosage to 120, 110, 100,etc. Settled at 86 mg for last 3 mo. of work. Retired and cut to 80 mg. Seems to be what my body will handle. Maintaining PSA of 0.130 for last year at that dose. Dr's say I'm in remission with some Pca hiding in my body. Needed both walls to walk up stairs, two hands to drink form glass, couldn't open water bottle. Now I can carry two cups of coffee up stairs, open bottles etc with 80 mg dose. We are all different and if you are on 120 mg dose already, you know this. Best of luck to you.

Doug

caretkr profile image
caretkr in reply to Shooter1

Thanks. He was started on 120mg from beginning but now due to dizziness we are meeting doc again if need to readjust . Doc started him on BP pillls already. I understand everybody's response would be different. Hoping for best! Good luck to you too.

ctarleton profile image
ctarleton

Sometimes older people get what is called "Benign paroxysmal positional vertigo (PPPV)" when the head is moved while lying down or looking up. Tiny crystals move around in the inner ear's semicircular canals to create the sensation. There is a repositioning procedure that can sometimes work for BPPV.

There can be other reasons for dizziness, too. Check with your doctor.

As for Xtandi, the clinical trials experience showed Falls reported in 10% of participants on Xtandi compared to 4% on Placebo. Regardless of the Xtandi dose, it might be helpful to review the on-line search results for "preventing falls in the elderly", just in case.

caretkr profile image
caretkr in reply to ctarleton

Thank you. Yes getting checked with doc. Good luck to you too

noirhole profile image
noirhole

My wife had me get some trekking poles for extended walks she noticed I was a little wobbly. Having to really push through the fatigue on a 3 pill reduced dose. Weakness and archy joins also. Full dose nearly had me bed ridden. My body is not a fan of this drug.

caretkr profile image
caretkr in reply to noirhole

Thanks. Lets see if doc reduces the dose , he started on 160mg from beginning. Good luck to you as well!!

j-o-h-n profile image
j-o-h-n

I use a plumber's helper for a cane...sometimes it's a bit of a struggle to unstick it from the floor.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/04/2019 2:35 PM DST - Pinnes

Seebs9 profile image
Seebs9 in reply to j-o-h-n

It's called a hesi-cane, much different than the huri-cane

j-o-h-n profile image
j-o-h-n in reply to Seebs9

and a sugar-cane...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/05/2019 3:50 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

I use a bowl brush for my teeth .... may be why I look like Alfred E. Neuman.

j-o-h-n profile image
j-o-h-n in reply to monte1111

What...you worried?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/07/2019 1:10 PM DST

larry_dammit profile image
larry_dammit

Yes, had to go on blood pressure pills. Haven’t had a attack since.

caretkr profile image
caretkr in reply to larry_dammit

Thanks larry , he has been started on BP pills too since last week

If he is only getting dizzy while lying down, consider that some good luck. My tip for those on Xtandi is to never set off after getting out of bed or off a chair without waiting a few seconds and ensuring a stable stance. Then set of in a straight line slowly, and increase speed if feeling stable. We have to learn to always turn slowly, as this can trigger a loss of balance. A stick helps, as does shoes that do not catch on things like carpets. Shoes that stop a reflex recovery (like slops) or a slippery floor are accidents waiting to happen. The more your can walk, the easier it becomes.

I found that adding a teaspoon raw ginger to my morning oats got both my BP and sugar down a bit. Exercise is also important, as is breathing. Xtandi can actually have you stop breathing (or cause shallow breathing), and that rockets the blood pressure to dangerous levels until you take some deep breaths.

caretkr profile image
caretkr in reply to

Thanks for you suggestion , will try ginger and deep breaths. He does walk around 5 Kms daily and takes care to wait some time before changing positions. Just that its been more than 1.5 years on 120 mg of this drug but dizziness is recent. Doc started him on BP pills recently. Love and luck to you as well.

zenbee13 profile image
zenbee13

Hi caretkr,

Not just Xtandi, but also Zytiga drove my BP up and made me dizzy. Zytiga was so bad I had to get the Onc to reduce dosage from 160mg to 120mg to function.

It has not left me completely, so that now I have a beautiful motorcycle in my garage that I can only start and run, and never take to the streets again. I have to sell it, I'm just dragging my feet and my wife knows it and calls me on it... a lot!

The thing that really sparks my ire is that for Zytiga they know it is more effective with food, yet never have done the follow up to find out what the reduced dosage would be.

$$$ at work making the AMA appear an arm of Pharma instead of patient advocates.

Anyway keep hunting, and keep advocating for your man!

Peace and love,

Bees

caretkr profile image
caretkr in reply to zenbee13

Thanks Zenbee13 , hopefully it will work out for him well , meeting doctor to discuss further. He has been on 120 mg from beginning. was there any particular time of day that you took xtandi pills? Wish you good luck and love too!

Shooter1 profile image
Shooter1 in reply to caretkr

I take my 80 mg as last dose of meds before 20 mg melatonin and 2 mg clonazapam at bed time. Didn't ask Dr's about any of my dosage cuts, told them afterwords after discussion with my wife and deciding 3 yrs. of active life was better than 10 yrs, as invalid,.

zenbee13 profile image
zenbee13 in reply to caretkr

Hi There,

I take my Xtandi first thing in the morning with breakfast. Or at least with my coffee before breakfast. I don't worry about food interaction with the Xtandi.

I would say to you that Maryjane (marijuana) has been quite good to me for pain, but I am in California where it is legal.

Peace, and love,

Bees

caretkr profile image
caretkr

Hello all, Just wanted to update that doctor increased dosage from 3 tablets to 4 tablets for Enzalutamide and prescribed BP pills . We will be monitoring how it goes this month.

Knittingque profile image
Knittingque

What Blood Pressure pills where they and what dosage please

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