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Xtandi and Orgovyx

Vp7174 profile image
15 Replies

Hey all - my full bio is in my profile. My question is pertaining to joint pain. I”m on Orgovyx and Xtandi of which things started to decline once we added Xtandi to the mix. My joints seem very arthritic.. From my feet to my hands. Getting out of bed is tough, but once I get going, the pain seems to subside a bit and flexibility improves. I do go to the gym at least 4x per week. My question is - Can I take a supplement or something else to help with all this joint pain? Doc wants me on this for another 18 months. I’m pushing through it, but can’t help to wonder that these 2 drugs may be causing irreversible joint damage. I’m 52 and PSA is undetectable, which I’m grateful for. Thanks in advance everyone.

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Vp7174
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mrscruffy profile image
mrscruffy

I take Glucosamine for joint pain. Seems to work don't have much knee pain and they are ready for replacement

Vp7174 profile image
Vp7174 in reply to mrscruffy

Do you take the liquid form or pill form?

mrscruffy profile image
mrscruffy in reply to Vp7174

Pill, and NOT Glucosamine with Chondroitin

Vp7174 profile image
Vp7174 in reply to mrscruffy

Is there a brand you found particularly beneficial?

mrscruffy profile image
mrscruffy in reply to Vp7174

I use Nutricost from Amazon

32Percenter profile image
32Percenter

Try MSM in gram quantities daily. From what I understand glucosamine converts to MSM downstream anyway so cut out the middleman. I've found it very effective for joint pain in general over the years, at 1.5g at breakfast and another 1.5g at lunch. I've worked a pretty physical job for 16 years and I've been training pretty intensely and consistently for 28 years now, so I'm speaking from experience. Some days I'd wake up hurting in multiple places even before ADT!

I think the cause of joint pain on ADT is primarily the loss of estrogen. No testosterone means no conversion of test to estro, and I think estro plays a role in keeping your joints lubed up. At almost a year on ADT, old minor joint injuries l'd pretty much forgotten about are starting to ache.

Vp7174 profile image
Vp7174 in reply to 32Percenter

Thank you for sharing

katartizo61 profile image
katartizo61

Xtandi did me in joint wise and swelling. My MO c\took me off it for 10 days and we began a 1/2 dose 10 days ago. Definitely better tolerated. I will get blood tests this weeka nd see what effect the 1/2 dose is doing. Next my MOM discussed a 120mg/day dose, we'll see. I do take proteotytic enzymes several time a day and at night. Helps. There are several natural alternatives anti-inflam wise, give them a try each for several days and go from there

Vp7174 profile image
Vp7174 in reply to katartizo61

Thank you for sharing. I was on 160, and was advised by my MO to stop for 3 full days, then resume at 120 - that was a week ago. He wants to see what effect a 6 week period of 120mg does. I suppose I’ll research the anecdotal advise given on this thread and see what, if anything helps out a bit.

katartizo61 profile image
katartizo61 in reply to Vp7174

Fair enough. There are many toys I use as I hold an Integrated Medicine Cert. With that said what works for one doesn't always work for all. The programs I suggested are soild

Professorgary profile image
Professorgary

curcumin extract standardized to 95% or more. Must contain black pepper for absorption. I take 700 mg x4 daily and eat 3or 4 nuts for fat when I do. I get it from Swanson. Magnesium from Magwell which also contains zinc and vitamin D. I also get a prescription for cecebrex which is a cox 2 inhibitor. Not hard on digestive tract like nsaids that block cox 1 and 2 enzymes. I highly recommend you google curcumin and celebrex for prostate cancer. Both the curcumin and magnesium help protect the heart from damage caused by adt and magnesium is needed for your body to be able to process calcium. Half the people in the US and magnesium deficient. It takes 4 to 8 weeks to get maximum benefit from both. Also google curcurmin and magnesium for blood pressure which adt has a tendency to raise.

Vp7174 profile image
Vp7174 in reply to Professorgary

Thank you for your reply. I’ll look into your suggestions and get back to you with any questions.

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

Me....??? Water on the knee and beer in the joint..........

BTW I've noticed....... UserIDs are getting weirder and weirder........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/13/2023 7:49 PM DST

ElemanJ profile image
ElemanJ

If joint pains started after initiating Xtandi try to reduce the dosage from 160 to 120 mg. You could take 1000 mg/day Glucosamine for atleast 3 months. Glucosamine doesn’t work immediately, but helps on a longterm basis.

Bacana profile image
Bacana

My husband has developed what we think is meralgia paresthetica, compression of one of the large sensory nerves in the leg. This coincided with the start of Xtandi so probably a side effect. He has cut back to 40 mg and will increase to 80 mg after 1 week. Fingers crossed this will be enough to keep PSA low.

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