Stopping Prolia

[wings54]

Has anyone taking Prolia switched to another osteoporosis medication in order to eventually stop medication all together. I understand stopping Prolia by itself can cause femur fractures. Thank you Jo

[Rocknlily]

Are you having side effects with Prolia? Doesn't it last 6 months? I just posted asking about alternatives.

[wings54 in reply to Rocknlily]

Yes,I am having side affects from Prolia after my first dose March 27th of this year. My endocrinologist thought this medication was best suited for me as I’ve 2 unprovoked sacral fractures along with some other medical issues.. Each dose is given once every 6 months. I’ve decided not to pursue this medication any longer.Alternatives would depend on your particular situation.

[agingfeminist]

You must take medical advice before stopping Prolia. You will need to take other medication to stop a rebound effect that will cause deterioration in your bones. I have been on Prolia for 3 years, fortunately so far with no side effects. Hope the transition to another medication goes smoothly.

[wings54 in reply to agingfeminist]

Thank you.

[wings54 in reply to agingfeminist]

Thank you.

[Sunseaandsand]

Hi , stopping Prolia can and does cause rebound fractures anywhere not just in the femur.

The usual follow on treatment to avoid this is a Bisphosponate.

Many people will tell you that after one injection of Prolia rebound fractures will not occur and you will be safe to come off it without another treatment.

I myself had one injection of Prolia and 2 months later had 2 spinal fractures. My specialist was completely honest when I asked could this be as a result of not continuing the Prolia, his reply was : it is possible and can not be ruled out but how does one prove it.

Many of us are left in ignorance with osteoporosis and everything that comes as a result of it, things never get explained to us and we have to use our own resources to gain knowledge.

Perhaps you and I am sure many others do not realise is that these treatments do increase the density of the bones, but with many there will be rapid loss of bone without any follow up treatment.

Bisphosponates do stay in the bone longer so bone loss is slower after stopping this treatment.

You say that your way forward is to not take any future treatments despite advice from your doctor and having already suffered 2 fractures.

Have you tried any of the other treatments?

I have 10 spinal fractures and like yourself these have all occurred without any trauma.

I have been on every treatment offered to me and despite being very sensitive to medication and treatments some I have even re tried in hope that second time round I would be able to tolerate them.

Osteoporosis is a horrible disease under recognised and misunderstood it does not go away and without help the bones will deteriorate further and for some of us this will be at a much faster rate than others.

Take care and take time to make the best Choices for your own personal situation.

[wings54 in reply to Sunseaandsand]

Thank you so much for your input, I am currently researching other osteoporosis medications and will see my endocrinologist this August and discuss this going forward.

[Rocknlily in reply to Sunseaandsand]

I’m confused, sincerely, not being sarcastic. Prolia lasts six months, you state you had two fractures 2 months later after your injection. How is that due to stopping it if your next does was in 6 months?? Wouldn’t stopping it be 6 months later, not 2?

[Sunseaandsand in reply to Rocknlily]

My apologies for the confusion.

I should have made it clearer. I was due for a second injection of Prolia in the November which I declined owing to bad side effects from the first injection.

Two months later in the January I had the two fractures.

It is so very difficult for some of us with osteoporosis to find a treatment that we can tolerate.

I of course am not in the medical profession but have lived with Osteoporosis for 19 years now, my journey has been a painful and difficult one and it has left me permanently disabled and reliant on others for my care.

My advice to anyone offered treatment would be to try it for themselves and stop reading the negative reviews.

I wish you all the best for the future.

[Gary1983 in reply to Sunseaandsand]

What are your BMD and BTW before you injected Porila?

[Sunseaandsand in reply to Gary1983]

I will have to look at my records to answer this but will try to reply later.

I am not sure what the BTW is short for??

[Gary1983 in reply to Sunseaandsand]

Did you have severe osteoporosis before you injected Porila?

[Sunseaandsand in reply to Gary1983]

Yes my osteoporosis was severe.

Also before the Prolia injection I had been treated with Bisphosponates , a two year course of Forsteo, and they had also given me Raloxafine for a short period of time.

[wings54]

I apologize for the confusion, the two fractures I had were in November last year and first dose of Prolia March of this year.

[Elizabeth65]

After I had to stop Prolia after using 4 injections over 24 mths. Due to tooth extraction I was told not to renew Prolia as it can cause Necrosis of the Jaw Bone if one gets a tooth infection or an extraction goes wrong. I got 2 spine fractures in L2 and L3 due to dumping of calcium after stopping Prolia just 10 weeks after not renewing Prolia. It stays a long time in one's system and dentist after afraid of patients on this drug.A public hospital gave me Annual Infusions of a bisphosamate Fosamax for 2 years and my Dexa Scan went from -2.50 Osteoporisis to 1.50 Osteopenia. So they have given me a Drug Holiday for 2 years since March 2023. Just taking Ideos Calcium with Vitamin D daily. I get Public Health treatment in Bone unit in Ireland.

Good Luck,

M

[wings54 in reply to Elizabeth65]

Thank you so much for your response.

[Rocknlily in reply to Elizabeth65]

I didn’t know Fosomax came as an infusion. I will have to look into that. That may resolve my stomach issues with it . Thanks for sharing.

[Hidden in reply to Rocknlily]

HI Rocknilily,

the infusion is called Zoledronate. Here is a link to our fact sheet that will explain this drug further for you. strwebprdmedia.blob.core.wi...

[Breathless1943]

I’ve been on Prolia for 10 yrs without any problem. After the first 5 yrs my consultant suggested I tried something else I do believe it was the drug above Zoledronate, I couldn’t tolerate it so I went back on Prolia.

I’m now due to start another 5yrs,BUT I had a Dexa Scan last November,and last week my consultant told me it looks good to the degree he would refer it to I no longer have Osteoporosis,but because of my age,I’m having another 5yrs of Prolia. For the last 3 yrs I’ve given it myself.

So personally I think it’s great. But don’t just stop discuss it with your GP/ consultant/ or whoever you feel comfortable talking to. I do of course take vitamin D and get my calcium from my food.