Lupron SEs - legs

[NickKnick]

Appreciate this forum and all whom post. I’m amidst 2-year course of Lupron and experiencing persistent leg pain, worst in both Achilles tendons and calves. Recent salvage IMRT, too. Thoughts on managing such SEs appreciated. Cheers.

[mrscruffy]

May be way off base here but have you tried a stretching program with bands? May be a case where KT Tape can help you

[NickKnick in reply to mrscruffy]

Thanks. My thoughts as well but stretching hasnt helped.

[mrscruffy in reply to NickKnick]

Maybe look into KT Tape. There are plenty of You Tube videos on subject and use. Many pro athletes use it and I have had good success with it and best is it is cheap

[Break60]

I switched to estradiol patches to stop all those nasty side effects.

[PELHA in reply to Break60]

We just started these as well. Have you noticed a difference and how quickly? Thanks!!

[Break60 in reply to PELHA]

I’ve been on estradiol now since FEB 2019 . As I recall I noticed fewer side effects pretty quickly after switching from Lupron . When psa started to climb again I added 80 mg Xtandi in Feb 2021. Three months ago psa started to climb again to 0.2. I’m due for another blood test in a couple weeks. Fingers crossed!

[PELHA in reply to Break60]

Oh husband still on the Lupron. The patches are just the low dose ones. Yes good luck!!

[Break60 in reply to PELHA]

patches are supposed to be .1mg/ day dosage changed weekly.

[Mike1971]

I had problems with my achilles tendons when I was on lupron and zytiga for two years. Every morning the tendons were stiff making it hard to walk down our stairs. Not sure the meds were the reason, but when I went off them this problem disappeared.

[NickKnick in reply to Mike1971]

Thanks for the reply. Exactly my issue. Still have year plus ADT so hoping for solution in meantime. Good luck to you.

[Break60 in reply to Mike1971]

Yes Lupron sucks!

[Ian99 in reply to Mike1971]

I have been having this same issue with both Achilles tendons. Am on ADT plus Lynparza. I thought I was overdoing the gym bike. Reading you guys would indicate a SE.

[Jeremiad53 in reply to Mike1971]

I talked my MO into cutting back on the dose of Zytiga from 1000MG to 250 and eating with it. This is the beginning of my 3rd year on this, and my PSA is 0.1 consistently. I feel much better with the lesser dose.

[London441]

How is your health overall? Weight, body composition, exercise habits? Do you know if you have edema?

[NickKnick in reply to London441]

Good thought, and thanks, but not edema. Highly active and in excellent physical condition otherwise.

[SteveTheJ]

Seems likely your neuropathy is not related. Check other possible causes as well.

[Jeremiad53]

I have been using electrolytes often. I have Liquid IV in the cupboard, Pedialite on a shelf, and anytime I feel what I perceive as muscle pain happens I pour on the electrolyte drinks. Eat an Avocado, Bananas daily. Walk often, ride the bicycle.

[32Percenter]

On ADT (Zoladex + Nubeqa) for 19 months so far, and I feel pretty bad stiffness when sitting still or lying down for prolonged periods. I feel like the Tinman when I get up, and need to "oil" my joints by moving slowly before really getting going. This is not just in the knees and ankles, although it's what I feel the most since walking involves these of course.

Have you done chemo? I started to experience a dull ache in my right heel near the end of my Taxotere rounds, and still about a year out it's somewhat better but hasn't fully resolved. Physio did nothing, and x-ray and ultrasound didn't show any calcifications or tendon damage. It's possible the heel bursa (between the Achilles tendon and the calcaneus) may be subject to some autoimmune issue brought on by the chemo.

[NickKnick in reply to 32Percenter]

Alas, “tin man” about captures it. Well said. No chemo test for me - just Lupron. Good luck to you.