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
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.
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.
Agree I did had random time as well. It took 20 min to explain my dr.
Have you try Aleve ?
Negative
Try it may help you immediate if you do not have access to gabapentin
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.
❤️❤️❤️
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!
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.
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.
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
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.
thank you
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.
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!
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.
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
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.
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!
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!
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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