I will keep this brief so that I don't bore anyone!
I am 55 yr female, and to my horror, fractured T12 out of the blue one morning two and a half years ago. Little did I think it was a fracture, so I walked and went to the gym for 4 days. This is with evolving neurological signs. Anyway, following hospital discharge, my DXA scan showed severe osteoporosis. I was shocked.
My metalwork did not hold, so following a further 2 fractures, I had a T4-L4 spinal fusion. I had a very prolonged hospital stay of 5 months, due to sepsis, and a further 3 months in a spinal rehab unit. During this time L4 at the bottom of the construct fractured badly. This has left me with Adult Spinal Deformity. This may require corrective surgery if my bone density improves. My question is about the treatment members have had, and if anyone is potentially in my situation. I have completed two years of Teriparatide. The plan was to follow with Denosumab, but when my Rheumatologist heard there was a slim chance of surgery, he decided to begin Bisphosphonates instead. The reason is that Denosumab can cause cellulitis and I already had significant sepsis and am on life-long antibiotics. Have most people here followed Teriparatide with Denosumab?
Written by
emersee
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Sorry to hear of your troubles. I too didn't know I had 6 vertebral # s till xray - had to fight for a month to get that ( dox glaze over when you sat back pain). I had no help, treatment just pain killers and left to it. I am glad to hear you have help so suggest you ask your consultant these questions. Good luck. 🤞
Thank you for your reply. It's a difficult position we are in. I hope the pain relief is helping and that you begin definitive osteoporosis treatment soon. If not, it is worth going to your GP to get to that point.
The idea is to shift to something that will protect gains/slow bone loss.
IMHO, Prolia is a nightmare. Run away!
Other anti-resorptive meds come with baggage - they not only slow bone breakdown, they also slow new bone formation. And, your dentist won't do extractions/root canals/implants unless you stop for 6 months.
2 other options to consider: Evista (kind of like HRT), or Fosteum Plus (a medical grade food/prescription supplement.).
Of the 2, my vote is solidly on Fosteum Plus. Is uses a phytoestrogen to slow bone breakdown and also contains micronutrients to support new bone formation. Ordered thru the online pharmacy, BlinkRx, it runs $40 per month.
I wouldn’t touch Denosumab with a barge pole! Have you seen the information about rebound fractures? I won’t take bisphosphonates - not impressed by the mechanism of action. I too had 2 years of teriparatide which was brilliant and significantly increased bone density in my spine. I reluctantly take Raloxifene (Evista) which doesn’t help with pain but is supposed to protect against spinal fractures which is important as I already had 5 when I was diagnosed. It was the only other thing I was offered. It’s made me gain weight and made my hair even thinner so I’m not that impressed with it but don’t feel safe just relying on supplements and exercise. Fosteum plus isn’t available in the UK as far as I know.
Thank you for taking the time to reply to me. Yes, I have read about rebound fractures and I would wish that none of us experience those. They seem to be due to a delay in beginning further treatment. I agree not to rely on supplements, diet and exercise only. I have found a fantastic trainer at a local gym. He adapts my training according to my level of pain which is due to metalwork which has moved due to fractures. I hope you are doing well and thanks again. Emersee
Thank you so much for your reply. It's interesting to me that you say to run a mile from Denosumab. My dentist is happy that no work needs to be done which is why I was hoping to begin Denosumab. My reading around the topic has given me confidence that it is the right move after Teriparatide treatment.
I had not heard of Fosteum Plus but I take a combination of calcium, Vitamin D3 and K2. Not quite the same!
well you’ve surprised me.I had a bad bout of cellulitis a year ago. I was in hospital with it for a couple of days having intravenous antibiotics.
I am on Denosumab and have been for three or four years now. I had the Terraparatide first.
One thing I must say is that and I touch wood when I say it but I haven’t had any more fractures since being on it. My bone Dexa was very bad to start with it has improved but I’d like it to be stronger than it is.
Would any of you who've taken any of these drugs with improvement in bone density be willing to share specifics? Like, beginning t-scores versus numbers after two years on--whatever?
I'm new to all of this, just a year out from initial diagnosis. also severe (-4.6 in spine, -3.3, -3.5 hip,) with several fractures, but nowhere near the horror that Emersee has had (I can't begin to imagine, and am so sorry!) I'm not old enough for medicare in the US, and my private insurance didn't feel Evenity was "medically necessary". I didn't think Fosamax was right for me, based on info I got from forums like this one, and the endocrinologist I finally saw agreed it wasn't worth it, but I did take a few doses of it over two different time periods. (9-10 in all.) I did make quite a few changes to diet, supplementation and started using a vibration plate in addition to the walking and (now, very careful) strength training I'd already been doing. I truly didn't expect to see any improvement, based on what folks on these forums said, though as is often noted, happy people seeing great success aren't posting on these forums, either. And those who do don't very often give specifics, so it's hard to determine what "significant improvement" actually is. (Of course my care providers tell me nothing.) So I'm curious.
As I say, I didn't expect much, actually fully expected to get worse, so I was very surprised when both my hip and spine scores had improved--and I'm pretty sure improvement in my spine would be "significant" at 14.6% (now at -3.9!) (Hip improved around 4%.)
I'm sure, when and if I ever hear from my PCP, and/or when I see my endocrinologist, they'll attribute the gains to those 9-10 doses of Fosamax, and assure me I still need drugs. but I have decades ahead of me (potentially) so to my mind, the longer I can put off starting them, the better. When the "natural" route starts to not work (I've seen plenty of comments from people saying they didn't improve, or started going backwards again even while on the drugs,) I'll entertain the drug option; maybe there will be something better by then, or I'll be on medicare and (maybe) will have more options. My endo's next choice for me, since I couldn't get Evenity, is Reclast, the Prolia, which doesn't sound right to me at all.
But, if I can hear from people who have had significant improvement, I may feel differently
(For what it's worth, my mom, who probably had ten years of DAILY ingestion of Fosamax, then went on Prolia (she started when Fosamax was the new thing,) has impressive t-scores now, except in her wrist, which is still in the -4's. My father-in-law, who also got himself into the osteopenia range on Prolia, told his doctor he wanted to quit, and his doctor said "fine" after which point, my father-in-law's spine disintegrated, seriously. He went from around 6'2 in height to 5'9" and stooped, he's in pain 24/7 and we're all aghast that this happened. I shudder to think that the same could happen to my mom, or any of us, and from what I've read, the gap in services can easily be unintentional--like, insurance changes and things don't get sorted out in a timely manner. I know anything can happen with anything, but supply chain issues, not being able to get or keep appointments, and such is way more out of my control whereas boron, Vit D and K are cheap and relatively easy to stockpile. Yeah, the drugs just scare me. But, I get it, when you're falling apart, you want to throw everything you've got at it, and...I probably will, too. But I was very encouraged that lifestyle changes could make as much difference as they did in so short a time.)
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