Bone loss - loss of flexibility, can’t tie up shoe lace - Denosumab (Prolia)

[Ausi]

Just a further question to yesterday’s post on Osteoporosis, a couple of years’ ago I had a couple of mets which were treated but had caused bone loss on my pelvis. My lastest scans thankfully shows no further activity but I’m currently finding that I’m losing flexibility and cannot move my right leg high enough to put on socks and tie up shoe laces and my wife tells me “what are you going to do if I’m not around”. (Don’t tell me to get Velcro laced shoes because I can’t find a golf shoe with it).

My onc said I should have my doc give me an injection of Denosumab (Prolia). It’s an Osteoporosis drug but I don’t have osteoporosis. My doc said that if he gives me one shot I’m going to have to have it every 6 months for the rest of my life and get my teeth checked before hand and take a calcium and Vit D pill, and it may not fix my flexibility problem. I came across this study which concluded:-

Denosumab is a drug with significant clinical activity for the prevention of SREs (skeletal-related events) patients with metastatic CRPC. Thereby, it has a significant positive impact on QoL and pain, it has been shown to exhibit efficacy with regards to prevention of bone metastasises.

So I suppose it’s a good thing to do.

Is (I) anyone of you using it and (2) will I soon be able to tie my shoe laces, if not (3) any suggestions (I can’t play golf with one shoe on).

[Hidden]

My MO Will give me Monday my third prolia shot . Why can’t yours ? One every six months . I’m in osteopenia .Ive been 0n constant adt for over five years . I started the bone nutrients at the same time as my first prolia shot . A year and a half ago .. I was in much more Pain then than I am now . I’m told that I’ll only do a total of 4 shots then stop .... but I’ve seen others here that have been on it many years without stopping . It like all of our treatments ,they have a down side . I’m told that it strengthens the bones but then it makes them more susceptible to fine line fractures later .. I think that you can get to a better place . I think prolia has helped my hip pain alleviate . For how long? We shall see ? If it doesn’t help you can always stop . I’d like to hear that it’s working for you .. Good luck and let me know please?

[Ausi in reply to Hidden]

Sure Whimpy, I’m not sure if one should ever go off it once you’re on it, this was a safety warning from their web site info

Clinically significant hypersensitivity, hypocalcemia, osteonecrosis of the jaw, atypical femoral fracture, multiple vertebral fractures following the discontinuation of Prolia® treatment,

[Hidden in reply to Ausi]

Whoa ! I haven’t seen that before .Omg ,that really sucks .. . If it helps your pain it’s worth it in my book . I’ll mention these after effects to my mo on Monday ? Sounds like another drug for life thing ? Good luck ...Thank you Sir

[Ausi in reply to Hidden]

Here’s the rest of the safety warning

Important Safety Information

Prolia® is contraindicated in patients with hypocalcemia, in women who are pregnant and in patients with a history of systemic hypersensitivity to any component of the product. Patients receiving Prolia® should not receive XGEVA®. Clinically significant hypersensitivity, hypocalcemia, osteonecrosis of the jaw, atypical femoral fracture, multiple vertebral fractures following the discontinuation of Prolia® treatment, serious infections, dermatologic adverse reactions, musculoskeletal pain, and suppression of bone turnover have been reported in patients receiving Prolia®. Prolia® may cause fetal harm. It is not known whether Prolia® is excreted in human milk.

proliahcp.com/other-indicat...

Good to hear you’re going ok with it.

[Hidden in reply to Ausi]

Good thing I’m not pregnant?

[GoBucks in reply to Hidden]

Looking at my Lupron belly it appears I am 7 months pregnant. I better warn my MO before my next Xgeva shot.

[Hidden in reply to GoBucks]

My first year or so I thought I might be pregnant as I had morning sickness daily as I was being quickly feminized...At the same time I had crazy pms ing or some kind of hormonal themed project going on . I couldn’t help of thinking about a few hormonally imbalanced woman that I had known . Mom being number one . I was turning into my mother .. I love her but she is nuts always has been off . TMI 😂

[Ausi in reply to Hidden]

Me too, my hot flushes were worse than my wife’s, she was sick of hearing me complain, and I’m starting to agree with her rather than arguing with her

[Hidden in reply to Ausi]

Arguing gets us know where fast . We have been in menopause together ,she and I . Sometimes both hot flashing at the time . We have our unique moments .. She’s coming out of hers . Mine is for life . The price we pay eh? I was so weak for about a year and a half with the tubes and foley . While going thru imrt I couldn’t put on my shoes or get up with out my wife helping me . It’s all “ yes ,dear ‘ happy wife happy life . My wife says now ‘ “complain ,complain, complain,” I’ve done some major bitchen , poor girl . I understand how you feel . I think you’ll get better . Stay positive always . If we ever give up or give in we are done . Hang in there🤙🏽

[GoBucks in reply to Hidden]

My wife keep forgetting my name. She calls me " Dick".

[Hidden in reply to Ausi]

Yes dear!

[Ran2599dy]

You should read the information on a website betterbones.com/

[Ausi in reply to Ran2599dy]

Thanks, there are some good tips, will do

[RyderLake2]

Hello,

I have been on a maintenance dose of Prolia (denosumab) along with Vitamin D and Calcium/Magnesium pills for over seven years. No significant side effects although my family doctor does like to check kidney function prior to injection. Very little chance of Osteonecrosis of the Jaw (ONJ) with Prolia. Less than 2% and probably even lower if you practice good dental hygiene. I would let your dentist know and have any needed extractions done prior to your first injection. My oncologist considers it to be a much safer drug than Zometa (zoledronic acid) another option. Hope that helps.

[Hidden in reply to RyderLake2]

That’s what I like to here. No problems with it for you . Thanks

[Tall_Allen]

Get a DEXA scan first to check for loss of bone mineral density. Don't take Xgeva or Zometa unless you need it. Similarly, get blood test for Vitamin D and Calcium - don't supplement unless you need them.

Flexibility goes with age. Get physiotherapy and learn specific stretches. Yoga helps.

[Ausi in reply to Tall_Allen]

Thanks TA, I had a bone scan done and the doc said it was ok but I see that there are different gradings:-

What is a normal DEXA scan score?

DXA Scan Results

T-score of -1.0 or above = normal bone density. T-score between -1.0 and -2.5 = low bone density, or osteopenia. T-score of -2.5 or lower = osteoporosis.

I’ll discuss my results with him further. My vit D levels should be ok, Calcium is difficult to get as much as is needed. Apparently you need 1000 mg per day, “cow’s juice” of a cup and a half I would have in my daily coffee gives only 400mg, sardines on toast 270mg. Tofu is the highest at 832 mg.

Why do you suggest not to take it “unless you need it”. I had found this study:-

In patients with nonmetastatic CRPC, denosumab has been proven to significantly increase bone metastases-free survival.

ncbi.nlm.nih.gov/pmc/articl...

[Tall_Allen in reply to Ausi]

"What is a normal DEXA scan score?" Normal is +1 to -1

"Why do you suggest not to take it “unless you need it?” Because they are strong medicines with many potentially serious side effects. See Gregg57's recent post. I've been working out and running/biking/hiking most of my adult life, so my bone mineral density (BMD) is much higher than normal. It's not something to take unless you need it.

That link doesn't apply to your case.

[Ausi in reply to Tall_Allen]

Thanks TA, you’re right, my MO suggested it only because of my frustration and lack of flexibility in my leg movement. I’ll discuss further with him re the other test results and do physio, yoga. Hopefully a better solution.

[Hidden]

Gentle yoga to start- you can do damage with too vigorous a practise . Susie Hatley in BC has some great information on functional movement

[Ausi in reply to Hidden]

Yeah, I should/will see a physio and start Yoga, stretches, exercise.

Might have to do it alone until the world gets safe again.

[Hidden in reply to Ausi]

My wife does on line yoga . Our daughter teaches a glade on zoom for $5 donation . But I’m lazy . If you can do yoga you will do much good for self . I’m interested in gi~ gong or tai `chi . Maybe I’ll look on line ? ✌️

[Magnus1964]

I've been on xgeva (Prolia) for 4 years. I haven't had any side effects. I thought I was developing necrosis of the jaw but the symptoms dissipated.

[Ausi in reply to Magnus1964]

Thanks, good to know.

[Hidden]

Magnus has battled the beast for 27 years brother . He s seen a thing or two . Do anything you feel fit to cure you body and mind . ✌️

[Schwah]

linksoul.com/products/ls990...

That’s a slip un golfshoe. There are more Online. I’m a golfer. It’s the only time I don’t think about this stupid disease. If you do, you’ll shoot a million. Play well. FORE.......,

Schwah

[Ausi in reply to Schwah]

Thanks Schwah, it doesn’t look like a golf shoe, but looks pretty comfortable. Yeah it sure is a great tonic.

[Schwah in reply to Ausi]

It beats playing with one shoe. Man I lost a lot of distance with ADT but I’m a way better chipper and putter. Guess it’s cause I never hit a green anymore. Lol.

Schwah

[Ausi in reply to Schwah]

Yeah, I try for a double bogey free round these days

[j-o-h-n]

walmart.com/ip/Carex-Sock-A...

My only suggestion about improving your golf score is............ cheat....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/08/2020 2:14 PM DST

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

I might try chucking the ball out of the bunkers, that’ll save a few shots

[j-o-h-n]

Just make sure you chuck them towads the cup....with our balancing issues.... that might be an issue.... and -

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/08/2020 5:39 PM DST

[Hidden]

Hey guy! I just re-read your post! How are you today? I’m on the prolia also. Over two years now. Scans show I have a fractured rib. First time in my life. I feel like the crumbling man. And painIsn’t the friend. Take care. Hope all is well !🙏

[dougnola]

For what it’s worth, I’m on a biophosphonate (alendronic acid) and it has stabilized my bones over the past several years (I hit osteopenia stage two years ago) with some actual gain in density in my back (I’ve been on ADT since 7/17). Prolia would be my next line of defense. My doc has told me that for both of these, it’s a bad move to get off it. I still walk 15-20k steps every day and have no pain. Keep the faith! ✌️ DougNOLA

[Ausi in reply to dougnola]

That’s great Doug, keep it up.