Restless Legs: Hi all - curious if any... - Advanced Prostate...

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Restless Legs

Yzinger profile image
20 Replies

Hi all - curious if any of you are experiencing pretty intense restless legs?

I am a triplet therapy patient and am through the chemo and radiation (maybe quad therapy:)) so wondering if somehow Darolutamide is contributing to this?

I also take a statin, a reflux pill, vitamin D, flomax, and cialis.

Obviously this is tough to pinpoint and I understand that - but just curious if others have any thoughts.

Thanks

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Yzinger profile image
Yzinger
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20 Replies
God_Loves_Me profile image
God_Loves_Me

I am NOT doctor and It is not medical advise, I had similar problem when i started zytiga and I could not sleep at all. I did ultrasound for clots as well. Dr started "gabapentin" 2 tablets and that help me a lot.

Yzinger profile image
Yzinger in reply toGod_Loves_Me

Thanks for the reply. I will look into it.

Strangely, I don't have the restless legs when I go to bed - it is very consistent between 8-10pm for some reason. When I really settle down.

God_Loves_Me profile image
God_Loves_Me in reply toYzinger

Agree I did had random time as well. It took 20 min to explain my dr.

Have you try Aleve ?

Yzinger profile image
Yzinger in reply toGod_Loves_Me

Negative

God_Loves_Me profile image
God_Loves_Me in reply toYzinger

Try it may help you immediate if you do not have access to gabapentin

Kaliber profile image
Kaliber

I get ( hefty ) restless legs as well. Usually in the evening after supper but can be anytime. Low dosage benzos ( Xanax .25 ) clears it up quickly and reliably for me.

This , as with any medication , should always be talked about with your medical care team.

❤️❤️❤️

P3Nav profile image
P3Nav

I take Enzalutamide (Xtandi) and as soon as I lie down, I get the restless legs feeling. For some reason, a flatter pillow that doesn't raise my head so high in the air helps!

Skoda1 profile image
Skoda1

I too get restless legs, but I remember getting them long before diagnosis when I was too tired -exhausted. Now I'm on Degarelix and Enzalutamide and they appear more often. I find that a 'kicking exercise' helps enormously. Just imagine that you are kicking a target about waist height as hard as you possibly can. You may need to hold onto something. Do this alternating legs for a few minutes. Nothing to lose and no extra medication. Best of luck.

MobilityTech profile image
MobilityTech

I'm only on Relugolyx ADT, and at times I get intense restless legs I never got before. Horrible feeling that's difficult to describe and relentless. Staying in bed and trying to tough it out doesn't work for me. I have to get up and walk around barefoot, doing laps around inside the house twisting the balls of my feet in the carpet for 15 minutes or so. Usually after this I can get to sleep.But along with my restless legs also come continuous hot flashes. So I have a water cooling mattress pad under the bottom sheet that also has helped me stay cool and not start the restless legs, and I can sleep through the night. I don't get them like I did before I got the cooling mattress pad.

janebob99 profile image
janebob99 in reply toMobilityTech

Sorry to hear about your bad hot flashes. You may want to consider taking low-dose, all-natural, estradiol patch or gel, which will stop your hot flashes and reduce osteoporosis. It's called "Estrogen Add-Back", because it "adds back" the estradiol that was lowered during (and after) ADT. One large estradiol patch per week (0.1 mg of E2 over a 24 hr period) is a good starting point. You can also get estradiol gel from Divigel.com or Estrogel.com, with a doctor's prescription. They are about the same price.

Have you had a recent DEXA scan?

Bob in New Mexico

Professorgary profile image
Professorgary

magnesium deficiency can cause restless legs. 60% of US population is magnesium deficient. Fact, your acid reflux pill depletes magnesium if it is a PPI. God bless.

Yzinger profile image
Yzinger in reply toProfessorgary

thank you

BadNews4me profile image
BadNews4me

Have been dealing with RLS for years. It’s a horrible condition and I have found relief using prescription medication Mirapex. Discuss with your Dr.

Hope you find something that works for you.

FigureGround profile image
FigureGround

I've had RLS for years, long before PCa diagnosis. I'm not sure the ADT I take makes it any worse. but pramipexole (2 x 0.125 mg), a prescription med, taken early in the evening really helps. Without it, RLS can be hell. Best of luck!

Cebubob profile image
Cebubob

I too get the legs from Erleade, only when I lie down and try to sleep. My urologist prescribed Flexiril for back pain which helps and I take one along with an oxycodone when it gets bad. Also, tonic water that contains quinine helps quite a bit. Also a cup of Chamomile tea before bed helps. Good luck with it.

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

I'm just adding more to the pile of shit we suffer with.

I've had peripheral neuropathy in my legs for centuries. Take gabapentin which sort of helps..... but I can't tell if I'm wearing my slippers or I'm not. I've seen my Neurologist a few times and we exchange jokes from time to time and then he tells me -

Good Luck, Good Health and Good Humor.

j-o-h-n

janebob99 profile image
janebob99

I have had intermittent restless leg syndrome most of my adult life. My Dad had it, too. I currently take Ropinirole, 1 mg, which gets rid of > 90% of them. Occasionally, I take a double dose when they are especially bad. I also take 1200 mg/evening of Magnesium for leg cramps, which works great.

Oldunshavenone profile image
Oldunshavenone

I have had restless legs for a few years, starting in the late afternoons on to bedtime. Gabapentin helps a little, but a supplement called Mucuna, available on Amazon, has worked very well and I take 4/6 capsules to calm the restlessness completely. Never had a supplement work so well in my life!

Kayakbob profile image
Kayakbob

MedOnc prescribed Gabapentin (up to 1200 mg/day) for my restless leg issues My 'sweet spot' is 900 mg (3x300 mg) taken daily. It really works for me!

dmt1121 profile image
dmt1121

I also had this problem after chemo and now on Abiraterone. Oddly, an accidental radiation treatment injury to my perineal nerve and caused permanent pain down my left leg but cannabis gummies ended this issue for the most part. The gummies were for neuropathy but helped for rest legs also.

I also took Gabapentin and now take Lyrica which calms nerve pain and sensitivity. I have found Lyrica to be more helpful with less side effects. I had restless leg syndrome before I had PCa though. Getting up at night and sleeping on the sofa sometimes helps because it limits your movement and gives you the back pillows to lean on. I think it's individual, so trial and error.

Good luck.

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