Mitochondrial damage and osteoporosis

[HeronNS]

This was posted on the Bone Health forum. As inflammation is mentioned I thought it relevant to Us Lot as MB57 would say:

penntoday.upenn.edu/news/li...

[DorsetLady PMRGCAuk volunteer]

Interesting....

it seems that neither mice nor men have control of their lives (with apologies to Rabbie Burns).

[Telian]

Thanks Heron, very interesting......

[teesher]

Forgive this dim question but if we are careful to take our calcium supplements and extra calcium in our diet, does the research suggest that this is pointless? That our bones are in trouble with pred no matter what we do?

[HeronNS in reply to teesher]

Without additional Vitamin D and Vitamin K2 (and a few other things) we are in trouble with bare calcium supplements anyway! But it certainly seems there is more we need to consider. Not that I have any idea how to manage any new issues. Just food for thought and keep an eye out for future info.

Btw, denosumab (Prolia) works by targeting the protein called RANKL. Which may be why people who stop taking Prolia are at risk for rebound osteoporosis as the osteoclasts are suddenly free to make up for lost time.

My personal feeling is if we do everything we can to maintain bone health unless there is some other factor at play, such as parathyroid problems, there's no reason why we shouldn't be able to maintain our bone density, if not actually improve it, pred or not. Certainly I was able to improve my bone density despite being at a pred dose above 5 mg most of the year between my two DXA scans. It remains to be seen if I've maintained that improvement....

[Nanor in reply to HeronNS]

Were you on any osteo treatment? E.g. prolia? My recent 2019 dextascan has shown osteopaenia in one hip. My 2017 dextascan was OK. My back and other hip are OK. I will confess to have been totally neglectful of taking calcium/vit D tablets recommended 3 years ago to me when first diagnosed eith PMR. Went from 20 mgs Pred to now 5 mgs....with ups and downs in dosage due to flares. Any opinion on Prolia? Something tells me it is for osteoporosis not ostopaenia.??????

[HeronNS in reply to Nanor]

I have never taken any of the osteoporosis drugs and my "treatment" is outlined here:

healthunlocked.com/pmrgcauk...

[HeronNS in reply to Nanor]

Drugs are not usually recommended for osteopenia and certainly it should never be prolia - which may subject you to rebound osteoporosis if you discontinue it. That being said the frax calculation put me into a range where they recommended I take drugs. I refused and now my t-score is so improved (without drugs) the recommendation has been dropped. My risk factors included pred, age and having a previous fracture, although I still dispute the fracture was a "fragility" fracture. It was caused by trauma.

[HeronNS in reply to Nanor]

Nanor First off, no one should be prescribed prolia for osteopenia. Probably hardly anyone who has osteopenia should be prescribed any of the bone meds. It's just too easy for the doctors, but it can lead to problems for the patients. If it were me, I'd somehow find time to schedule in a half hour just to walk, possibly with Nordic poles or a weighted vest (work up time using either carefully) so that you do get some outdoor weightbearing exercise. During your day you can find time to do some heel drops. Even walking downstairs helps the bones (walking up helps the heart). Do you have access to any respite help?

As for bone supplements, the Vitamins D and K2 are probably more important than calcium itself as we can get quite a lot in our daily diet, but those two vitamins can be hard to get enough of without supplementation. And a nice soak, even a footbath, with Epsom salts, gives you magnesium, absorbed through the skin.

Good Luck. Do keep in touch through the forum and let us know how you are getting on.

[Nanor in reply to HeronNS]

Exactly what I thought myself . I had a hunch about bone meds.....and I felt that prolia was more appropriate to full blown osteoporosis than to ostopenia.....I am heavy as I am 13.5 stone 5'3".....do I still need a weighted vest?....Hopefully not! I am going to the GP this week and will say I am researching and am too concerned to go on the injection just now. I know for sure that I was not taking my vit D and calcium pills regularly at all.....wil lstart that and get K and see what happens on next Dextascan I think.....thank you SO much f or your concern and spending time replying. Incidentally I have been taking magnesium supplements for about 2 years now to deal with leg cramps at night. They are magic!!

I do have 10 hours weekly respite and an occasional week...about 3 weeks annually. I do walk up and down the stairs 100 times a a day!! (Slight exaggeration). Interesting about the difference either direction makes to different issues. ..I never knew that..I have a pedometer on my phone.....must start using it again......

May I trouble you further by asking you what "heel drops "are?

[HeronNS in reply to Nanor]

That magnesium will have been helping your bones too. I think you are well on your way to maintaining your bone density without any scary drugs. The thing about weight is bones respond to new stimulus. So those of us who have lost weight are really about to also loss bone density, so wearing a weighted vest and gradually increasing the weight over time provides a challenge to the bones and helps maintain and even improve density. This is, as you've surmised, not such an issue for those who already carry good weight on their body. I went to an osteoporosis workshop at my hospital and nearly without exception we were all slight of build. The lone exception was a woman who came because her mother had had OP and she was being proactive to protect herself from same.

[HeronNS in reply to Nanor]

Here's one video about heel drops:

youtube.com/watch?v=tZ8gy_V...(Not working as expected?)

[Nanor in reply to HeronNS]

You are just amazing for all the trouble you are going to for me! I am waving a big 'Thank You' across the Atlantic from Ireland!!

[HeronNS in reply to Nanor]

Ah, I really don't have a life. I'm afraid I use my laptop as an excuse to avoid continuing my lengthy settling into a new home. I can blame PMR/pred induced fatigue as much as I like, but in the end, tasks need to be done. But I'd rather be here!

[PMRpro Ambassador in reply to Nanor]

What is the t-score? Osteopenia is NOT osteoporosis ...

But a warning: If you start Prolia that is a "life sentence" - you can't stop it because it has been found recently that there is a rebound loss of bone density when you do. That means that either you keep getting the injections for life or you switch to oral/other bisphosphonates.

[teesher]

Thanks Heron.

[Curls443]

Thank you for posting, very interesting again.

[Hidden]

I thought this might look a bit difficult to read but it is fine 😂😂😂

It would be interesting to know if that was the case with prolia - naughty osteoclasts! That would be a big step forwards in understanding the mechanisms. But not sure the development of a suitable long term/life long drug would happen in my lifetime.

I have been to 3 pharmacies for vitk2 but they didn't have it! I will have to go to a health food shop as they were called. Hey ho, I will get there eventually.

[HeronNS in reply to Hidden]

As denosumab targets RANKL, the protein which encourages osteoclasts, among other things, I think that's why it was hoped it would turn out to be the magic potion. Now we know, not so much.

[PMRpro Ambassador in reply to HeronNS]

Well it is - as long as you keep taking it!!!!!!

[Reeceregan]

I’ve been on Prolia for nearly 2 years....I wasn’t planning on staying on it forever. Rethink. Damnit 😔

[HeronNS in reply to Reeceregan]

Gosh, has it been that long? I think I remember when you had just started, seems like a few months ago. How are you feeling these days?

[Reeceregan in reply to HeronNS]

I just realised when I read your response that I did get a bit ahead of myself...first injection was beginning of February 2018, so I’ve had 3 injections in 15 months. I’ve tolerated the Prolia very well, no side effects attributed to that, and by the end of this month I’ll be off the prednisone, just doing a taper from half to nil at the moment. I’ve recently had both cataracts removed in theatre, two weeks apart, one successful, the other one not so good, and a bcc removed from my forehead (in theatre, as he was worried about the location between two big veins, and it was pretty deep )and didn’t need to increase the pred. 3 ops in 6 weeks. I did lose the majority of my long blond hair coincidently at the same time as the first Prolia shot but I believe it was more the result of the higher pred doses previously for GCA as well as PMR that caused it. Still have a few aches and pains, left shoulder in particular, rheumatologist just ordered an X-ray and ultrasound on that, I fear he suspects arthritis or something else going on, and when I get up off a chair I look like I’m about 90 as I struggle to straighten in the next few steps. Then I’m good to go and off and run....walking. Need to try to build muscle now,....could take a while 💪🙇‍♀️

[HeronNS in reply to Reeceregan]

Interesting year and a half to say the least. Hope things go your way from now on!

[Joblow]

Mitochondria are the ‘powerhouses ‘ of our cells. When you’re feeling bereft of energy- not sleepy but drained of any oomph- it’s likely a problem with mitochondria.

[HeronNS in reply to Joblow]

Or in our case our adrenal glands not being properly tuned up after long term prednisone.

[Joblow in reply to HeronNS]

Of course you are right. I was thinking about the lack of energy I experienced with PMR prior to taking meds.

[HeronNS in reply to Joblow]

I do find this mitochondrial thing really interesting. Life is so miraculous and thinking about the organelles in the cells, I'm awestruck. Life forms billions of years old have congregated and become self aware organisms.

[Hidden in reply to HeronNS]

That made me shudder...in a good omg isn't it amazing way.

[HeronNS in reply to Hidden]

We are the Universe becoming conscious.

[Hidden in reply to HeronNS]

And again. I will be doing a cosmic journey in my sleep. I was William Shatner's best friend last night so anythings possible. 🛰️🚀

[HeronNS in reply to Hidden]

Oh, envy, envy.... I hardly ever remember my dreams any more.

[Hidden in reply to HeronNS]

These duloxetine dreams are amazing...if I get sleep.

[HeronNS in reply to Hidden]

Well the closest I've got to drug-influenced sleep was probably when I was trying to overcome my lifelong insomnia by taking valerian. That did seem to improve the quality of my sleep and I was aware of having dreamed.

[Hidden in reply to HeronNS]

Not worth taking them just to have amazing dreams though. I have always remembered mine. Most are lucid these days.

[HeronNS in reply to Hidden]

That could be a good thing, I think people try to train themselves to have lucid dreams. 😴

[StillBreathin]

Interesting and good read, thank-you!