ANY ONE HAVE LEG PAIN WITH APALUTAMIDE (ERLEADA)

[john4803]

Been on Lupron for 2.5 yrs. then off 1.5. Due to skeletal metastases, MO put me back on Lupron & Erleada. Very little side effects when I was on Lupron. 3 wks. in, getting uncomfortable leg pain, in both legs. Mainly the underneath of thighs have a dull ache and feet feel slightly numb and tingle. Weird but actually feels better to stand up than sit or lay down. Makes it difficult to sleep! Ibuprofen works but trying to determine if it is a side effect of Erleada (probably not Lupron) and not taking Ibuprofen. So trying not to take Erleada, for 2 days, until I do my monthly visit for labs in 2 days. Stopped taking it at MO's advice.

Still going out for hour long fast walks with wife with no problem. My wife is a retired Dietitian and thinks it may be a Potassium (normal before starting both drugs) problem and we will get that reading in 2 days. Anyone else experience this?

[john4803]

Thanks, Nal! My Dietitian wife should be able to calculate my Potassium load with one hand tied behind her back! After my visit with my MO, I will share his thoughts, also!

[j-o-h-n in reply to john4803]

Hey John...... give the little woman a break..... until that one hand..... geez

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 6:28 PM DST

[john4803]

So, do you only have leg pain at night?

[Lyubov]

O.K., thanks so much!

[KocoPr in reply to Lyubov]

I was having leg cramps only at night and tried all of the electrolytes nothing seemed to work, (i was on keto for about 5months). What worked best right away was calf stretching , and then got off keto after going from 185 to 141, now back to 160 where I like to be. So try simple calf stretches along with what Nal recommended

[john4803 in reply to KocoPr]

My legs get a pretty good stretch from my wife and I's daily 3-4 mile walk, 5 days a week. However, I purposely stretch my hip flexors, too. After a couple of days of this, I've decided it may be bone pain, in the underside of the thighs, because I can't rub it and feel any soreness or massage or stretch it out. Once the Ibuprofen wears off, it feels better to stand rather than sit or lay down. Taking it 3 times per day. Haven't figured out how to stand up and sleep. Couldn't learn to do that, even in the Army, 50 years ago.

Going to see the MO in the morning and will report back. Thanks for all of the suggestions!

[Lyubov in reply to KocoPr]

Hey, yes, this sounds like a very good idea & something I haven't been doing so much. Will redouble my efforts. I am lined up for physical therapy & expect to get some good targeted exercise advice. Thanks so much!

[j-o-h-n]

My legs feel like painful mush............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 6:30 PM DST

[john4803 in reply to j-o-h-n]

john, do you think it's muscle or bone? I should know but what drug are you taking?

[j-o-h-n in reply to john4803]

To answer your question, I think it's a combo of both.

Hip problem, Hernia and leg muscles.

1 Neurontin/Gabapentin 600mg for peripheral neuropathy.

1 ICaps (Lutein and Zeaxanthin – Yellow caplet) for eye health

3 WelChol 625 mg for cholesterol (CONST)

1 Citracal with Vitamin D +

1 Herbal Cranberry supplement 300mg (urinary tract support)

1 Toprol XL (1/2 of 25mg = 12.5mg) once a day (Beta Blocker)

1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day (for leg/nerve pain)

1 Bicalutamide (Casodex) 50 mg

1 Vitamin D tablet 2000 I.U.

1 Diltiazem 30mg when my pulse rate was over 100 (as needed)

1 Prolia (Denosumab) injection every 6 months.

For Bone Health.

1 Furosemide 20mg tablet (taking ½ 10) water pill for heart every day in the evening –

Chocolate Chip ice cream (two scoops).

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 7:59 PM DST

[Boywonder56 in reply to j-o-h-n]

No good drugs in thst bunch....

[j-o-h-n in reply to Boywonder56]

Ice cream...........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 8:28 PM DST

[Boywonder56 in reply to j-o-h-n]

Only if its......rocky rococo.......

[j-o-h-n in reply to Boywonder56]

You read me like a dirty novel......... I would really go for some pepperoni on my ice cream...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 8:45 PM DST

[john4803 in reply to j-o-h-n]

Wow you must have a BIG pillbox? Any specific SE's from the Denosumab? I start a monthly injection of Xjeva tomorrow.

[j-o-h-n in reply to john4803]

No pillbox..... nowadays plenty of room in my wallet... So far no issue with the Denosumab (Prolia)............. But I mistakenly thought the Prolia was for BONER health (man oh man was I disappointed)......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 8:34 PM DST

[Boywonder56]

Ive been on erleada almost 5 yrs....cramps..yes...drink diet tonic water with quinine or pickle juice.....but i have lost at least 60 percent of leg strength due to adt....i have what i refer to as "heavy legs"....have to actually think about lifting legs when climbing stairs....cancer sux...

[j-o-h-n in reply to Boywonder56]

To BW56

I've just gotten to that phase.... heavy legs...... Thinking of putting an escalator in my house....Yes it does suck...... big time, all the time....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 10:32 PM DST

[Boywonder56 in reply to j-o-h-n]

My fred astaire dreams are......fading...

[j-o-h-n in reply to Boywonder56]

LOL and mine too.....

youtube.com/watch?v=Ek9-HGH...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/17/2022 11:04 PM DST

[RCOG2000]

The observation that change in position changes the symptoms suggests a vascular component

[john4803 in reply to RCOG2000]

Just returned from my MO & labs. show a significant drop in Calcium, in 1 month, from 9.4 to 8.3 (normal range 8.5-10.5). May be causing pain. Will work on supplementing.

Prescribed Celebrex (100mg) every 12 hours as needed for pain, also.

Got my first Xjeva injection (120mg/mon), too.

Thanks everyone for sharing your thoughts.

[john4803 in reply to john4803]

Embarrassed to say that I figured out the source of the pain. I have only been constipated a couple of times in my 74 years and obviously not that cognizant of the signs, because that was the problem! I remember when I had to go, the pushing action accented the leg pain but with my Lupron brain I didn't realize the cause and effect! 🥵🥵

Still thanks for all of your suggestions!

Pretty good news from my visit, PSA dropped from 7.3 to 0.7 in only 4 weeks on Lupron & 3 weeks on Apalutamide. T is 42, down from 331.

[PSAed in reply to john4803]

No need to be embarressed and thank you for posting, as a newbie this is all valuable information to me.