Osteoporosis Holding Steady

[k9ophile]

I had my annual DEXA scan. I saw the endocrinologist on the 25th. No change. I can live with that.I also got my Prolia, no adverse effects. It's all good.

 

[southernlady]

That’s good to hear. My husband is on Prolia, all the others are off the table due to his history of severe kidney stones.
we both have repeat DEXA’s next year. I’m still doing the Reclast.

 

[Spiky Bugger]

Okay, you two. (Any anyone else who wants to play.) I’m getting my DexaScan Thursday. I asked my doctor to order the test.
She: Since you don’t want to take the medications, why do you want a test?
Me: In case my family/friends are better at talking me into it? They have more time.
She laughed.

BUT, Prolia warnings SEEM TO BE directed at me. Personally! On their website, they want you (me) to understand that you (I) may need Vitamin D and Calcium supplements while being treated. I already take those supplements and don’t absorb enough.

They also say “Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine.” I’ve had several.

And some complaints of bladder problems and I already have Interstitial Cystitis.

And when I look at reviews at other places, I see stuff like this, where satisfaction is FAR from the norm.






So I’m a coward. I wish I could try a version of a Prolia that lasts a MONTH. But if it’s bad news, I don’t want to deal with six months of MORE health problems. Talking to MrSue, I said I think of it like I would think of chemo. My BFF had chemotherapy to fight an already metastasized cancer that was, unless she jumped in front of a bus first, going to kill her in the not-very-long. It turned her into a psycho bitch and she died anyway. My osteoporosis WILL get worse without treatment. But how many OTHER health problems will I have to deal with to stop that or slow it down? And what’s the cost/benefit analysis on THAT?

Kindly figure this out and get back to me because my brain is TIRED!

 

[k9ophile]

You win a cookie for your diligent research and thoughtful consideration. Seriously, these decisions are hard to make.

I thought the woes of 2020 were behind me. Ha! The pain from my hip fracture is less. Hooray for that. But now I have an ear infection that makes it hard hear and affects my balance. I also have a bunion which only hurts if I wear shoes for more than an hour. I guess that's why I'm so happy with my osteoporosis treatment.

I'll take any good news!

 

[Spiky Bugger]

You win a cookie for your diligent research and thoughtful consideration. Seriously, these decisions are hard to make.

I thought the woes of 2020 were behind me. Ha! The pain from my hip fracture is less. Hooray for that. But now I have an ear infection that makes it hard hear and affects my balance. I also have a bunion which only hurts if I wear shoes for more than an hour. I guess that's why I'm so happy with my osteoporosis treatment.

I'll take any good news!

And I just thunderstormed all over your parade. I’m sorry!

 

[southernlady]

Spiky Bugger Making these decisions are a PITA…you have to choose your hard.
I chose treatment as I didn’t want broken bones. I manage to keep my vitamins in the range I’m happy with and my PCP and my Osteoporosis specialist is happy with.
But I have other things I’m considering, my back, for example, I see my neurosurgeon this week to discuss permanent placement of the Spinal Cord Stimulator to help with the pain in my back to avoid any other medication, with their side effects, or spinal surgery. Yes, the SCS is surgery but minor compared to fusion of my back.
I’m also thinking ahead. I have ET. Mine are familia essential tremors and were just a minor annoyance until these last few years. This year I finally sought out medications to help (most I’m either allergic to or off the table). There is now a non invasive device paid for by Medicare that my Movement Disorder Neurologist is going to order for me as a DME. You wear it like a watch on your worst hand. She also mentioned DBS (Deep Brain Stimulation). That’s one I have to think on long and hard.

 

[Georgepds]

Re "My BFF had chemotherapy to fight an already metastasized cancer that was, unless she jumped in front of a bus first, going to kill her in the not-very-long."

My understanding is The 5 year survival for non metastatic breast cancer is ~99%... it drops to 29% if it metastasizes

Similar results hold for other cancers ( not all, eg, pancreatic cancer).... avoid metastasis with early detection if you can.

 

[hilary1617]

Those seem to be incredibly tough decisions. Please keep us posted.

FWIW, I'm due for a 3ish hour long MRI of my entire spine that I've been putting off as I really had a hard time lasting through my previous one. (Head cage + time + claustrophobia + lying on a hard surface too long = torture) Your discussion here is making me rethink my current strategy of delay and ignore, so my future bones thank you.

Wishing everyone well!

 

[southernlady]

Those seem to be incredibly tough decisions. Please keep us posted.

FWIW, I'm due for a 3ish hour long MRI of my entire spine that I've been putting off as I really had a hard time lasting through my previous one. (Headcage + time + claustrophobia + laying on a hard surface too long = torture) Your discussion here is making me rethink my current strategy of delay and ignore, so my future bones thank you.

Wishing everyone well!

See if they can do it in segments to allow for breaks.

 

[hilary1617]

See if they can do it in segments to allow for breaks.

Alas, not possible - they need with and without contrast and has to be continuous. Will ask for a sedative though this go around - hopefully that will alleviate the problem. Usually I don't have an issue with MRI's but this particular one is a struggle. Nonetheless, important and I'm glad this thread has got me thinking more strategically about my future state bones. Thanks!

 

[Spiky Bugger]

Those seem to be incredibly tough decisions. Please keep us posted.

FWIW, I'm due for a 3ish hour long MRI of my entire spine that I've been putting off as I really had a hard time lasting through my previous one. (Head cage + time + claustrophobia + lying on a hard surface too long = torture) Your discussion here is making me rethink my current strategy of delay and ignore, so my future bones thank you.

Wishing everyone well!

MrSue just did a hip MRI that had him whining like a baby. It didn’t last much more than 30 minutes, but his legs were separated with a wedge device and immobilized with belt-like things at the ankles. He says a maybe a prophylactic pain med (or anti-anxiety med?) might help, if you don’t have to drive and if your doctors don’t mind…very much.

When are doing this?

 

[Spiky Bugger]

See if they can do it in segments to allow for breaks.

I was going to comment on how brilliant you are, but hilary1617 has thwarted THAT plan! LOL

 

[Spiky Bugger]

Re "My BFF had chemotherapy to fight an already metastasized cancer that was, unless she jumped in front of a bus first, going to kill her in the not-very-long."

My understanding is The 5 year survival for non metastatic breast cancer is ~99%... it drops to 29% if it metastasizes

Similar results hold for other cancers ( not all, eg, pancreatic cancer).... avoid metastasis with early detection if you can.

Hers was non-small-cell lung cancer. And she was an EXPERT at living in procrastination/denial. (Also…she lived on a lakeshore, in the woods, in the middle of Wisconsin. Getting to/from advanced medical care was not easy.) But she was likely closer to the 8% on this chart.

 

[k9ophile]

And I just thunderstormed all over your parade. I’m sorry!

No, you didn't. I'm taking every little bit of good news and blowing it up, which actually is a change for me. Oscar the Grouch and Eeyore look like little sparkly unicorns compared to my usual state of mind. 2022 was looking like 2020 v.2.

I even got my flu shot and a Covid booster today. Chalk up another thing I did for my health. Perhaps a turning point?

 

[k9ophile]

Spiky Bugger Making these decisions are a PITA…you have to choose your hard.
I chose treatment as I didn’t want broken bones. I manage to keep my vitamins in the range I’m happy with and my PCP and my Osteoporosis specialist is happy with.
But I have other things I’m considering, my back, for example, I see my neurosurgeon this week to discuss permanent placement of the Spinal Cord Stimulator to help with the pain in my back to avoid any other medication, with their side effects, or spinal surgery. Yes, the SCS is surgery but minor compared to fusion of my back.
I’m also thinking ahead. I have ET. Mine are familia essential tremors and were just a minor annoyance until these last few years. This year I finally sought out medications to help (most I’m either allergic to or off the table). There is now a non invasive device paid for by Medicare that my Movement Disorder Neurologist is going to order for me as a DME. You wear it like a watch on your worst hand. She also mentioned DBS (Deep Brain Stimulation). That’s one I have to think on long and hard.

Best wishes for relief.