Nanaedake

Why not contact the ROS nurses through the Royal Osteoprosis website? They will give you good advice. Get a print out of your DEXA scan first so you got the facts to hand.

Chelsea123456 in reply to Nanaedake

Thanks for your reply, I am in Melbourne Aust, so hope I can find it.

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HeronNS in reply to Chelsea123456

This may be what you need if you are in Australia: osteoporosis.org.au/

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Chelsea123456 in reply to HeronNS

Thank you so much

I will look at it

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Meganisi

I have reflux and take Actonel (risedronate). ONLY taking it to stop rebound fractures. Had 2 Prolia injections. You need to take a substitute medicine for up to 2 years. Sadly. I’m taking it and don’t like the Actonel but so far it is keeping me safe....

Meganisi in reply to Meganisi

Sorry my post does not help you at all. I think you can get a once a month Actonel or an injection of another bisphosphonate. I was wary of injections though....

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Chelsea123456 in reply to Meganisi

Are you taking a monthly dose?

Will you be able to stop taking Actonel?

I was told to take Actonel for 3 Months, to wean me off. On a monthly dose, but i don't want to take the monthly dose, as it was way too strong.

I am now waiting for a reply from my Endocrinologist for his opinion.

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Meganisi in reply to Chelsea123456

Hi, no I am taking weekly. The monthly dose here in Australia is not enteric coated. Didn’t fancy it. The rebound fractures can occur at the one year mark and beyond. Google ‘stopping Denusomab Olivier Lamy. I think they produced a paper with recommendations. I have a copy. Is there a way to upload docs? If so I can share it. I will stop it as soon as my 2 years is up. Only another 18 months!

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HeronNS in reply to Meganisi

You can share a link to items on the internet.

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Arcadia10 in reply to Meganisi

Hi Meganisi

Would you mind sharing how things are going with you one year on from your post? I'm in Perth, WA. Also trying to get off Prolia safely, so have been forced onto Actonel to hopefully prevent vertebral fractures. I'm so annoyed as I resisted bisphosphonates for years, and here I am having to take them to get off Prolia!

No-one seems to know whether Actonel is effective in preventing rebound fractures. The preferred drugs are the IV zoledronic acid or oral Fosamax 70mg per week, as per Lamy's paper. So I'd be really keen to hear how Actonel worked for you. I've been on the daily 5mg for the past month. Couldn't tolerate the weekly 35mg.

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Meganisi in reply to Arcadia10

Hi Arcadia, well a lot happened to me after that post... and some of it to do with bones (which was to do with a 6 month stint on Prednisone).

I had my CTX and P1NP values burn turnover markers measured monthly to start. We then started to move them to 3 monthly and eventually 6 monthly. I count my stop date for Prolia, the date of the next injection that I did not have. So December 2018. Prior to that, I had 2 injections. I've been on weekly Actonel since then ie. 1 year 5 months. I am (under guidance of the endocrinologist) stopping the Actonel on May 23rd. We are going to measure CTX and P1NP again in July and if it climbs steeply, reconsider Actonel.

Before we arrived at this decision, I asked for an additional appointment with her to discuss the SCIENCE behind her decision making to come off it. I have read the 2 years is the recommendation. I was nervous to stop the Actonel but also desperate to stop it. I needed to be reassured.

Here is what she said:

1) No-one knows the optimal time to be on a substitute drug to prevent rebound fractures. They say 2 years because they have to cover themselves for all the variance out there in the population. ( I really pushed her on this point).

2) My CTX and P1NP markers have been steadily increasing just a bit. All within acceptable limits. That was described as "Actonel doing its job." What they wanted to stop was initial and sustained high turnover markers.

3) The fractures they were seeing around the world were occurring most frequently at the 6-12 months mark. Bone density appears to go back to your pre-Prolia levels.

4) In the intervening year, I had embarked on a bone density programme through exercise (see boneclinic.com.au) which helped (along with the Bisphosphonates) to improve my bone density by 5%.

5) I asked her if anyone else she sees had stopped Prolia. She said "yes plenty" and many of them without alternative drugs just because they did not know. She said apart from a one or two, they had been fine. I did not ask for numbers, but the fracture rate is about 10-15%. I really did not want to run the risk.

I did sustain a stress fracture in my hip ALA Dec '19. Prolia rebound was ruled out by 2 endocrinologists. I had been on Prednisone (which is known to dramatically weaken bones), for 6 months due to an auto-immune diagnosis. I was lifting weights that were way too heavy for my bones. I will be more careful if I ever have to go on Prednisone again!!! (Lesson learnt).

One other point about imaging. I had an MRI in the middle of the year prior to my auto-immune diagnosis. The radiographer wrote "multiple compression fractures" in my spine. I was freaked out. My endocrinologist looked at the images and said, "not so". There is no oedema. This is the kyphosis in your spine and they just look like wedge fractures, but they are not." She got the radiographer to rewrite the report!!! Lesson: question everything! Dont be afraid to shop around for opinion.

So, there you go. I am doing okay. It's been a journey though. I took the Actonel every Sunday morning at 6am and waited 3 hours before food. It was a kind of punishment to do that but I wanted it absorbed before I ate anything. I am about to stop the Actonel and am feeling comfortable to stop it. One more tablet to go!!!

I hope this helps. I wish you the very best with your journey. It's an awful place to be - that to stop this drug we need another. Feel free to contact me off list if you have further questions.

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Arcadia10 in reply to Meganisi

Thanks! Sent PM reply.

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pteyze

I have stopped taking prolia after two shots and bad side effects. I decided to go cold turkey and take nothing else. More calcium, weights at the gym diet changes etc. so far, I'm doing okay. Good luck to you

angryandfrustrated in reply to pteyze

I stopped Prolia after 3 shots, and developing Osteonecrosis. I am taking nothing except calcium, Vit D and exercise. It has been 9 months since missing my last scheduled injection, and I had a hip replacement surgery 5 weeks ago. So far so good. I hate the idea of drugs in my system - "less is more" and between "the devil and deep blue sea" is where i'll be.

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Meganisi in reply to pteyze

Pteyze - How many months out are you from your last shot? I hope everything goes well for you.

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pteyze in reply to Meganisi

Last shot was in October 2018. The reason I stopped was all of the sides effects following that shot. Hip pain, leg pain groin pain, hair loss. Ugh! Seem to be improving slowly, slowly since then. Thank God, hope it continues. Thanks for your concern

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Meganisi in reply to pteyze

I had all those pains too in legs hips and groin and chronic jaw pain. All gone 6 months later. Wasn’t that a nightmare. Fingers crossed for continued improvements.

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pteyze in reply to Meganisi

Nightmare is right! Glad it was all gone for you in six months. Keeping fingers crossed.

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Chelsea123456 in reply to pteyze

Have you had any bone density scan done since?

How are you feeling now?

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Chelsea123456 in reply to Chelsea123456

I am feeling okay.

Too soon to have another bone scan.

My doctor has agreed for me to stop taking prolia and medication for now. Review next year. Doctor says I should be safe.

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Sunseaandsand

Hi Chelsea hope you are feeling better than when you wrote the post.

I have 4 spinal fractures and as a result of them I am mostly in a wheelchair.

My bone density is severely low and over 15 years I have been on many of the treatments.

I have suffered horrible side effects some that have resulted in my being put under other specialists.

I have to say even though being on the treatments and still going on to having the fractures despite them.

If I was put on a treatment and it did not cause me any side effects then I would stay on it.

H having experienced 4 fractures it is easy for me to say this.

For any one with reasonable T Scores I would say go down an alternative route rather than the treatments.

Arcadia10

Hi Chelsea

I'm in Perth, WA. Similar situation to yours - trying to stop Prolia safely but after 4 injections and lots of unpleasant side effects. No medical professional seems to know a guaranteed safe way to get off Prolia. I'm on Actonel 5mg daily. I tried the weekly 35mg but had severe dizziness, upper back and neck pain, blurred vision, nausea, etc, so figured the lower dosage daily might be more tolerable. So far, so good, after a month.

It's now a year since your initial post so I'm wondering how things are going for you. Did you stop medication completely or did you find a drug you could tolerate? No fractures hopefully?

Chelsea123456

Hi Sunseaandsun, and Arcadia,

I am well thank you.

I do not take any medication. I only take vitamin D and Calcium tablets.

I walk when I can. No fractures so far, but been very careful with all I do.

I will see when I am due to have another bone scan with my doctor, but for now I am ok. Of course you don't feel any pain or discomfort if you have osteoporosis.

Good luck to you all with your health.

Arcadia10

Hi Chelsea

I agonised for weeks about taking a bisphosphonate to transition off Prolia, but decided in the end that I wasn't prepared to risk the odds, however small, of vertebral fractures. So it's good to hear that you're doing well with your own decision and have not experienced any fractures a year on. You're in a far better position after only 2 shots than others who try to get off Prolia safely after many years of treatment. Are you having your bone turnover measured to see what your CTX/NTX score is now? That result, from what I understand, is an indicator of fracture risk. It's good to keep tabs on it in case it goes too high and you need to take action.

You might like to consider taking vitamin K2 which directs the calcium into the bones. I also take boron and magnesium.

All the best.

sunny_rose

I had a horrible horrible reaction to the Prolia...my doc gave me the script for the Fosomax to wean off but I refused it all. I never filled it. I'm done with their poison. I've read so much and the drugs cause fractures and more problems. I know it's risky and my case is very severe. I've had many many vertebral fractures, wrist, ankle but I'm so scared of the drugs. I didn't have a fracture for ten years until I had the Prolia shot! No way.

Arcadia10 in reply to sunny_rose

That's terrible, sunny rose. So you're saying that Prolia caused further fractures after your original ones? How many shots did you have? You've heard, presumably, of the rebound fracture issue if you stop it without taking anything else? I'm gritting my teeth and taking the transitional bisphosphonate to get off Prolia, hopefully only for 18 months.

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RCarole

I can’t believe I didn’t research either. Dr just promoted that drug so high and I was stupid enough to believe him. Took it twice and side effects a mile long. Still dealing with it. Damaged my immune system.

Arcadia10 in reply to RCarole

I'm interested in your comment about your damaged immune system from Prolia. A month after my 4th injection, and having had back-to-back side effects from it (I realise with hindsight), I consulted a rheumatologist about an ongoing unusual blood test result which was a possible indicator of lupus. She ran some further tests and my IgG levels came back abnormally low. IgG is an indicator of immune system function and the fact that mine were off the low end of the scale meant that I was immunodeficient, ie. compromised immune system. Because there was no sign of infection anywhere, she decided not to treat. I was just at the point of putting 2 and 2 together re Prolia causing a litany of side effects, and wondered whether it had caused the low IgG blood test result. I hadn't had this blood test previously, so nothing to compare it to. How did you know that Prolia had damaged your immune system?

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wordwarrior55

I took myself off it cold turkey AND estrogen blocker too (the only reason I was on it at all was because they wanted to make sure I did not lose calcium to my bones while using estrogen blocker to prevent cancer) GIVE ME A BREAK. I did not need Prolia . I did not need estrogen blocker. I am using alternative natural things to block bad estrogen and I am just eating right and taking calcium/D/K/ C, all the good food I can eat. What happened with me during 4 injections was that my mouth got REALLY bad (worse and worse after each injection until I finally figured out for myself it was the Prolia). It's a very weird rare side effect where even today, a whole two years later, my mouth feels like hell. Bad taste always in my mouth and "oral phantoms" (something i found when I googled "weird mouth") In other words, I believe Prolia did not know where to go inside me because my bones were already fine, so it went to my brain and messed with my nervous system. I believe this is the case because I can feel currents always running down my back, like wind blowing on me. Prolia is the devil. I think after two years, my bones are fine. I think Prolia was a trick played on me and others to make us dependent on Big Pharma's drugs. This is my personal belief. If anyone knows what kind of doctor I can see for weird mouth and miswired nervous system, let me know . I've paid hundreds of dollars and can find nobody to help me. Good luck, Chelsea.

Blueskys111

You won’t feel side effects right away. The side effects are long term. It changes your bones forever and not for good. 3 years ago I had 3 shots of zumeta and 12 shots of xgeva. These are like prolia. Destroyed my bones. My teeth are suffering. I have constant bone pain. I didn’t have any information either. I wish I had not let them give it to me.