Reverting from full osteoporosis to osteopenia

[vivdunstan]

Wonderful news from the rheumatologist. My latest bone density scan 2 weeks ago in Perth showed that I have improved, going back from full blown osteoporosis 8 years ago to osteopenia, which is like part way between normal/healthy bone density and full osteoporosis. So the strong bone regrowth drugs (Alendronic Acid, a bisphosphonate drug, in addition to Calcium and Vitamin D) I've been on ever since 2017 have helped a lot! I am to keep on them though, because I continue to be on a pretty decent daily steroid dose. But that's ok. They are helping. They are a big complication for dental treatment options, because of how they can cause bone death in the jaw, limiting the types of procedures that dentists can safely do. But my dentist is working around them. And we are coping. So yay!

I've been on daily steroids permanently since 1998 (ill with primary cerebral vasculitis since 1994, but delayed diagnosis). Also my periods stopped completely for much of my 30s due to my toxic cocktail of other drugs. Only to resume for a short time after. So my bones have taken a pretty big hit. But reverting from full osteoporosis to osteopenia now is wonderful news.

Just wanted to share the good news! I have a particularly difficult to control progressive form of cerebral vasculitis. So things are tricky, though we've slowed the progression a lot. Amazing I'm still here 31 years on given my vasculitis medical history. But good news for a change is welcome!

[OldTed60]

Wonderful news - well done. I’m waiting to have mine in Perth too but so far I just have osteopenia so really hoping this hasn’t progressed 🤞🏻😊

[vivdunstan Volunteer in reply to OldTed60]

Good luck with yours! I had a couple of bone density scans in Ninewells in Dundee over the last two decades. Including the 2017 one that showed I'd moved from osteopenia to osteoporosis. I've been asking for another bone density scan in the years since, and finally got one the other week in Perth. Bit of a trip for us to get to from the eastern edge of Dundee! But done.

[OldTed60 in reply to vivdunstan]

Thanks. My first one was in Perth as well about 3-4 years ago. My rheumatologist (I’m in NE Fife so Ninewells) said 5 years but as I’m having a lot of pain in my spine and issues around previously fractured ribs we decided to bring it forward a bit. No appointment yet but I expect a fairly long wait - nearly a year last time. I assume it will be Perth again but maybe not. I’m on Rituximab and Mycophenolate and having a lot of problems with dissolving teeth thanks to Sjogren’s and Systemic Scleroderma. Apparently Rituximab and malabsorption (I now have a stoma) increases my risk of developing osteonecrosis following dental work - particularly if I need Zelandronic infusions. But we will see.

[piglette]

Just one thing your doctor should check if you still need Alendronic Acid every 3-5 years.

[vivdunstan Volunteer in reply to piglette]

Yup! Unfortunately the first time that should have been looked into was around the start of the Covid pandemic. Local bone density scans waiting times went through the roof, and rheumatologists were struggling to keep up with everything they needed to cover. I’ve been asking about another DEXA scan repeatedly, not least to know if the Alendronic was helping. It’s been frustrating. But finally got this recent scan. Will ask again in future. Thanks!

[piglette in reply to vivdunstan]

I know it is a nightmare. I helped raise money for our scanner. The current Queen opened it, as her mother had had bad osteoporosis. The facility now seems to cater for most of the south of England!

[Mooka]

Wonderful news. I’m so pleased for you and hope you continue to progress. Thanks for sharing it’s lovely to hear good news.

[Main1234]

wonderful news thank you for sharing

[KRBcat]

So nice to hear some positive news!!

Well done ✨

I’m also hoping mine has not progressed to the latter. Due my scan soon. And thank you for the reminder that taking these bone drugs do actually help and they’re not just another pill in the morning bundle x

[Suzywhizzo]

Hi Vivdunstan, I am so pleased for you after reversing osteoporosis to osteopenia, that is amazing!!! I just wanted to ask a couple of questions, as you have experienced the Alendronic acid. I too have osteoporosis and was told I need an injection for 3 years in order to help with mine. I think after breaking my heel and wrist in several places, they did the scan to discover the low bone density.

I had 1 injection last year, felt awful for about 3 days after and now my teeth have started to twist in the gum. I read how it can affect the teeth etc, but does this happen after each injection and are there other dentistry problems to look out for?

Having just read your great results, I can now see the Alendronic acid is a good thing.

I hope you continue with more positive news on your journey and really appreciate you sharing.

I wish you well

Suzi x

[vivdunstan Volunteer in reply to Suzywhizzo]

I'm on Alendronic Acid weekly pills. Which are a little bit different in effects from bisphosphonates given as injection. You should ask your medics for advice on this, and tell them that your teeth are twisting. Good luck!

The typical hazards for bisphosphonates - weekly pills and also yearly injection - are that they can cause bone death in the jaw after invasive dental surgery. They alter the way the body heals after that surgery. Which means that many routine dental procedures become extra risky, and often can't be done in a normal dental practice, but have to be done in dental hospital. Things like extractions and implants especially. It's also why people starting bisphosphonates should have any necessary dental work done before starting. Though medics rarely give good advice about this.

All the best!

[Bluey-1]

What wonderful news. I hope for similar improvements when I get a Dexa scan after my third Zoledronate infusion this year.

[vivdunstan Volunteer]

Thank you everyone for the very kind comments 🙂 All the best.

[Varp]

Lovely to read some good news on your vasculitis journey