Teriparatide - what to do next?

[Snowybear]

I’ve recently finished 2 years of Teriparatide injections. Endocrinologist wants me to take Alendronic acid tablets but I’m not keen. Teriparatide is the first treatment I’ve had and osteoporosis classed as severe. One fracture of L2 few years back. I wondered what protocol other people have tried after Teriparatide and whether it has proved helpful. Many thanks

[Dancingdina]

Hi I had the choice of starting Teperatide or Evenity and that this has to be followed by alendronic / risedronate or zolendronic infusion to keep building bone . I was told the injection treatment would help the alendronates work well. I have digestive issues and am suggested zolendronic infusion preferable . Hope this helps

[Snowybear in reply to Dancingdina]

Yes, thanks for replying. I don’t want an infusion, but guess I should be doing something. I’m not encouraged as the endocrinologist has written to my gp saying she expects my next Dexa scan will show a deterioration despite Teriparatide. I don’t know where she gets that from. Other drs in the dept had indicated I would have significant improvement so I’ve rather given up now and declined further scan. Can’t see the point!

[Dancingdina in reply to Snowybear]

Ahh don’t lose heart . I finally got the answers I needed ( after ten years of treatment that didn’t help much ) from Orthopaedic Spinal Specialist, Nick Birch, of Osteoscan UK Ltd - accurate scans from a different method of measuring density, along with great advice and excellent knowledge

[Snowybear in reply to Dancingdina]

Thanks for those encouraging words. I keep seeing good reports about him and must pursue…. Right now I’m in the middle of a house move, but worried I’m not having any follow on treatment as declined Alendronic acid. They all seem such awful drugs to take and just get told they can give more drugs if cause gastric problems and I don’t want to touch those either! Have been thinking of alternative supplements - do take vit D and vit k.

[Mavary]

Hi! There is controversy with anything you take. I went from Terraparatide to Denosumab. I’ve been on it now for three or four years. My bone scans were improving slightly on it. I had my biggest improvement on the Terraparatide. You ca only take that for two years unfortunately. I went from -5.5 to - 4.6 on it.

[Snowybear in reply to Mavary]

I’m not having a scan as now being told to expect further deterioration despite Teriparatide . Thanks for sharing your experience.

[Mavary in reply to Snowybear]

I’m so sorry. I suppose one size doesn’t fit all. Maybe there’s something else out there for you.

[Jemi7266 in reply to Mavary]

I too used Forteo for 2 yrs and had excellent results. After Forteo I used Prolia. After 4 yrs of Prolia my bone density started to decline, so now on Evenity for 5 months. I won’t know if Evenity is working until my next labs and DEXA due in March 2024.

[Mavary in reply to Jemi7266]

Oh no! I’ve been on it three or four years. My Cousin even longer and she had a fracture in the lumber region. It splintered and she was in a lot of pain. They wanted to operate but her blood pressure was so high and they couldn’t get it down. They don’t check my bones any more I had two Dexa scans and my Dexa scan last time was bad.

[Jemi7266]

I used Forteo for 2 yrs and had excellent results. After Forteo I used Prolia. After 4 yrs of Prolia my bone density started to decline, so now I’m on Evenity for 5 months. I won’t know if Evenity is working until my next labs and DEXA that is due in March 2024.

[Mavary in reply to Jemi7266]

That’s really bad luck. I can only hope mine will be ok.

[Jemi7266 in reply to Mavary]

Everybody is different. I wish you good results and good health.

[Mavary in reply to Jemi7266]

It does worry e now that I’ve heard of two people that have declined. I hope you dont mind me asking but how did you know it was declining to give me some idea. The thing is I’m in pain quite a bit of the time. So how would I know.

[grammyfish]

I was on Forteo for 2 years and had good results. My doctor wanted me to go on Prolia after and I didn't want to do that as I had heard some people get bad side effects. In addition, the only exit strategy for Prolia is to do another bone drug for a year or your chances for a fracture increase.. I told the doctor I wanted to take a wait & see. That's when the doctor told me that the Forteo doesn't stay in your body unless you follow it with another bone drug like Prolia or reclast or Fosamax etc. And that each person is different as to how fast it leaves/long it takes. I waited the year and I was right back where I started on my next Dexa scan. So yes, you can expect a decline in your DEXA if you don't do anything after Forteo. I wish the doctor had told me that before I started the forteo as I probably would have made a different decision.

[Snowybear in reply to grammyfish]

Thanks. Dr was saying she expects a decline straight after finishing Teriparatide- in other words she doesn’t expect any improvement to show up.

[Mavary in reply to Snowybear]

My bones improved. They were -5.5 and after Terraparatide were -4.6 I was really pleased with that.

[Snowybear]

I’m not having any treatment right now. I’ve just moved house and it’s all been chaos so now I don’t even have a gp! I have been prescribed Alendronic acid tablets but didn’t dare start them while I was moving. I’m sure there would have been some improvement - I can’t have had about 700 jabs for nothing!! Thanks for replying

[DeannaAlphi]

Hi there. Only 2 days ago I had a long conversation with a specialist nurse at the Royal Osteoporosis Society helpline. Curently I'm medication free. Had a total of 4 vertebral fractures and this time I'm prepared to give meds a try, even though I'm sensitive to artificial chemicals of any kind. I will not take biphosphonates.

She suggested 2 years of Teraparitide followed by 10mg of Raloxifine. She said there is no biphosphanate component of this medication and that it mimics the effects of estrogen which strengthens bone. I've no idea if I can persuade the medics to prescribe those things....wish me luck...I'm waiting for appointments.

I recommend the ROS helpline. I'm also interested in your experience of taking Teraparatide if you wouldn't mind sharing. I'm terrified of any medication.

Di Doh

[Snowybear in reply to DeannaAlphi]

Hi there. Thanks for reply. Teriparatide is the first medication I’ve had for what I’ve been told is “severe” osteoporosis. Don’t trust the biphosphonates. Was very apprehensive about Teriparatide. Daily injections were quite manageable and I had no side effects at all. I was sure I’d be nauseous as don’t tolerate medications well, so would recommend it, tho don’t know if it’s done any good. Only had the one vertebral fracture from lifting something stupidly heavy. I do take vit D and vit k2 when remember. Hate medications too!

[DeannaAlphi in reply to Snowybear]

Thank you. You've given me confidence in taking it. I'm just hoping they will will prescribe it. When I refused biphosphonates 5 years ago, I was not offered any alternative.

These recent 2 fractures have frightened me. All I did was raise one arm when I was cold. After watching a 7 day webinar, I now take my vit D3 with a meal which has healthy fat in it, or with a teaspoon of olive oil. Later in the day I'll take K2. Apparently they do not work as well when taken together.

Thank again.

Di Doh

[Snowybear in reply to DeannaAlphi]

Yes, I do similar with vitamins. Teriparatide I think is only offered after fractures as higher risk, so you may well be eligible I would think. Good luck with drs!