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Posted 7/5/2023 7:35 AM (GMT 0)
I have osteopenia but VERY close to osteoporosis (t=-2.4 last December and started
Orgovyx at that time). Surprisingly, BCBS did approve the drug. I'll be scheduling it soon. Two questions:
1) The SE are VERY SCARY when I read this: https://www.drugs.com/comments/denosumab/prolia.html
But, then again, uneventful outcome folks are not likely to post. Sooo... what has been your SE experience?


2) Never had a subcutaneous shot so what's that like?


Mel
Posted 7/5/2023 9:03 AM (GMT 0)
Mel, I never had any SEs that I know of with Prolia. I have had two rounds of it. Now about your question of a subcutaneous injections. The one I had was with Firmagon in my stomach. They pinch the skin up and and inject just under the skin. I don’t watch my injections with Prolia, but my Prolia injection was given in my upper arm, so I have no idea if it was subcutaneous. I have had many injections all over my body. This one stings a little, but that goes away fast. You do have to start taking calcium and vitamin D supplements. No big deal.
Jack
I should add, I believe cyclone has been on Prolia for years. His experience is probably more telling than mine.
Posted 7/5/2023 11:49 AM (GMT 0)
The Prolia SE's scared me too. Before I got the shot I got 2 implants I needed done, and a crown while I was at it. The "necrosis of the lower jaw" side effect scared me pretty badly as did the potential "spiral fracture of the upper leg". After the shot (in the fat below my tricep- NBD) I did trip and fall, breaking my hand in several places. The hospital said the fractures were 'unusual' but the Prolia explained that sufficiently for them. I made a note and didn't take it again. Good luck, Mel.


Rich
Posted 7/5/2023 12:30 PM (GMT 0)
This whole class of drugs scares me too. The jaw necrosis and leg fractures -- I thought these drugs were supposed to improve bones. When I started Reclast I tried doing some research but clear answers are elusive and I ended up getting exhausted with the effort. The best I could determine is that some people take the drugs much more often than PCa patients, but that may not include Prolia. These drugs seem like a side industry, and maybe they help or maybe not.

Interestingly, when I asked my MO about risks he shrugged it off as rare. My dentist didn't know what I was talking about.
Posted 7/5/2023 12:33 PM (GMT 0)
https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

This Mayo Clinic info seems pretty good.
Posted 7/5/2023 1:51 PM (GMT 0)
Rich:

This is confusing. Due to a spinal injury, I am unsteady at times and I have fallen.
Coupled with my bone density results and PC status, it would seem some tx is in order.
I am hoping to avoid breaking a bone(s), especially if I fall.
You are indicating that Prolia is responsible for your broken hand?

Mel
Posted 7/6/2023 4:37 AM (GMT 0)
Have been on ADT since diagnosis in 2013.

Bone density scans indicated osteopenia, soon thereafter.

From that point forward, I have received PROLIA shots, every six months.

The purpose is to maintain bone density. I also take calcium supplements and go on trail walks almost daily.

I AM cautious when there is snow and ice outside.

I stay active physically.

It's important to let your dentist know this at your next appointment, as well.

I have not experienced any troublesome or noticeable side effects.

I have a routine bone density scan, every now and again.

My best,
CYCLONE ~ # Iowa State University
Posted 7/6/2023 11:39 AM (GMT 0)
Mel

Went out for a run, tripped on the lip of a raised sidewalk section and fell. I landed well forward with my hands in front and to the side. My left hand was very bruised, x-rays showed a spiral fracture in the middle of my left pinkie metacarpal, an 'exploded' pinkie knuckle and a fracture parallel to the left ulna joint. Docs were confused as to the spiral nature of those fractures, the quantity of damage and the irreparable 'exploded' knuckle. While questioning me they asked about meds I was on and Proilia was one of those (at the time). When I said that, the docs all got knowing looks and figured that was the 'why' as to the amount and nature of the damage. I skipped any further doses due to that experience, just tried to be more careful.

Rich
Posted 7/15/2023 6:27 AM (GMT 0)
Update:
Well, had my first Prolia shot today. Was no big deal. She injected into the fatty tissue in my arm. Similar to a flu shot (hurt a bit more for the 5-sec. shot).


Mel
Posted 7/15/2023 2:57 PM (GMT 0)
Glad it went well, Compiler.

Yes, I also receive my PROLIA in my upper arm. Very routine. Every six months.

Occasionally, a day or two thereafter, I sometimes feel a subtle sensation best described as a "tingling in my bones" ~ for a couple of days. Very subtle.

All of us on ADT need to be careful of "slips, trips, and falls."

Be cautionary with ice and snow, as well.

Glad to hear it all went well, Compiler!

C-Y-C-L-O-N-E ~ # Iowa State University
Posted 7/19/2023 11:12 PM (GMT 0)
I also became osteopenic, while I was on Lupron. My T score dropped from normal-ish down to -2.3 in just 18 months, so it was alarmingly fast.

We started Prolia, after I got a "dental clearance letter" from my dentist. That jaw necrosis risk is very real, and I know someone in another forum who has had to deal with that. If it does happen, it's pretty ugly. Even after stopping Prolia, which I did after the first time my ADT ended, there's a risk of an unusual femur fracture. That stuff works pretty well, but it does have some rather significant side-effect risks.

Estradiol patches, 0.025 to 0.05 mg/day changed twice weekly, can do a good job of protecting bones (and preventing hot flashes). You want a blood estradiol level (E2) of at least 50 pg/mL. If I had to do it again, I'd absolutely do estradiol l patches instead of Prolia.
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