anyone on treatment for osteoporosis? Abaloparatide? Alendronic acid?

[osteotreat]

Anyone on treatment for osteoporosis? My consultant wants me to start 5 year set of injections but I see that NICE have approved abaloparatide for use in UK and thought that might be better. Is it actually available? Anyone have any experience of it as an alternative? All advice welcome. Thank you.

I take Alendronic acid tablets, one a week. A pain in the bum as you need to take them on a totally empty stomach with a large glass of water, then nothing to eat or drink for 30 minutes after. I bloody hate them (think it's a mental block really). I just had another bone density scan last week, waiting for the results.

Have they mentioned denosumab? (Prolia)
It's an injection every 6 months.

What was the injection the consultant originally suggested?

I'm having an annual Zolendronic acid infusion, due my 2nd last month, but couldn't have it because vit d too low.

My mum suggested asking for Romasozumab.

My friend did 18 months or 2 yrs in Forteo..teraparatide after she had a problem taking bisphosphates

it was a game changer. Her dexa scan showed she had moved out of osteoporosis and into osteopenia and she is now trying bisphosphates again to ‘lock in the gain’

I'm on Zolendronic Acid infusions 6-monthly - because I'm on anastrazole tablets to knock out all my oestrogen as part of my cancer treatment. There is some risk with bisphosphonates (zolendronic/alendronic acid) , rare, but recognised, of osteonecrosis of the jaw, so it is wise to ensure that any major dental work is carried out before starting them.

At what point are treatments like this useful- my mum has had 6 main joints replaced and now her spine is suffering.
shes never been offered drugs like this, is it too late?

I started on Alendronic acid whilst on Anastrazole, I had developed osteopaenia which was tipping over into osteoporosis. I was never offered injections only tablets, I would much rather have the injections.

I'm on the same. How often do you have to have a scan? I had one before treatment and haven't had another. I think that was about a year ago.

Yes, I didn't know about this beforehand and my dentist was angry with the doctors, saying we should be told to get any serious dental work such as implants done before treatment starts. I know I'll need an implant within the next year or so and don't know what to do about it.

Were they replaced due to osteoporosis?

I feel as though I've been forgotten by my doctor, tbh. How often are you all seeing someone about osteoporosis?

Yes, she has been dissolving.

I’m on HRT because I had very bad side effects with alendronic acid. To be honest unless my bone density goes too low I’ll stay on it - it’s certainly causing no problems, unlike the other option.

When I stopped taking it I was offered another Bisphosponate by my doctor. This one lasted for 6 mths but as it’s the same group of medication as alendronic I declined as if I had the same side effects I’d be unable to stop it for 6 mths.

I’m waiting to see a consultant regarding the new drug Abaloparatide which actually builds bone not just stops its decline. The doctor couldn’t prescribe, though she agreed it would benefit me, it as it’s expensive!

Every two years my breast surgeon said.

@MounjaroOnMyMind

I had a Dexa scan 18 months ago. On the report they request another in Sept this year.

I don’t feel as if I’ve been given good care. If you can’t take a biphosponate you’re pretty much left to do your own research and go to see the doctor with suggestions. At least that’s what I had to do. I’ve had 8 fractures so pretty high risk of further breaks.

I'm halfway through my zoledronic acid infusions and lost a crown about 18 months ago. The dentist could only top it with a temporary filling as not enough base left to recrown but I've lost this temporary stopping twice already! The plan is an implant when I've finished the treatment (something to look forward to 😁).

Yearly Zolendrate infusions
Dexa Scan yearly
Rheumatologist review every 6-9 months
Take Adcal D3 daily
36. Hip osteoporosis. Rest osteopenia. 3 fractures in 18 months.

@ohyay I wondered if it should be an annual scan (mine’s bi annual). I have osteoporosis scores in all areas and am down as ‘high risk of fracture’ I’ve already broken eight major bones - so I don’t doubt the assessment.

I’ve never seen a specialist. I have a phone appt scheduled but they keep putting it back. I’m not impressed with my care so far!

Can I ask which area health authority you come under?

I only saw the consultant once, was given an annual infusion, then discharged! I'm thinking of asking me to be seen again! Not happy.

The Royal Osteoporosis Society have a helpline staffed by nurses who give really good advice, they can tell you more about medication.

I took Alendronic Acid for about 10 months but then stopped due to side effects. I also took up strength training twice a week. In 3 years I moved back from osteoporosis to osteopenia. I might at some point have to go back on meds but for now I am hoping to try to maintain if not improve.

whatever you decide to do - go see a dentist for a check up.
before starting any osteoporosis medication your teeth and gum need to be in tip top shape to reduce the risk of some very nasty side effects.

also ask for alternatives - high protein diet & weight training are somewhat effective as prevetativs measure

North Yorkshire

Sorry to hear your not having the same support. It really is a postcode lottery. X

I'm looking for some advice with Alendronic acid.
I started the weekly tablets two weeks ago.
The first tablet gave me mild fluey symptoms the next day, and a dry mouth all week.
The second tablet gave me mild fluey symptoms that evening and the next morning, more severe fluey symptoms in the afternoon and even worse through the night, with a constant dry mouth.
My temperature went up to 38.4 degrees.
I feel fine this morning, except for the dry mouth, but the idea of gong through this every week is awful.
Are there any alternatives?