Prolia injection

[2poodles]

Hi, I'm new to the site and trying to navigate it. I was diagnosed with osteoporosis around 2005, I took alendronic acid for 8 years but haven't had medication since stopping. My t score is -2.5 hip & -3 spine. I'm 67 next month. My consultant is considering prescribing me a 6 monthly injection prolia or a yearly infusion (not sure what). I'm looking to learn as much as possible about these medications in order to make an informed choice. I would appreciate any help out there. Thank you

[Louisa1840]

Hello , I have had PMR for 7 years and I too have osteoporosis. I was persuaded by my doctor to start Prolia injections last year and I have just had my second one with no side effects. My doctor said she sees too many unneccessary fractures and, as I have a friend currently in hospital, in a lot of pain after a fractured vertabrae, I am very grateful for the Prolia. I would highly recommend it.......

[2poodles in reply to Louisa1840]

Hi, thank you so much for taking the time to reply. There is so much conflicting evidence out there. I'm pleased that your experience is a good one. My consultant is currently on leave so I'm weighing up the pros and cons. Thank you again

[RubymyT]

Hi , I took Actonel for 3 years , through Covid. I was advised by my doctor that it hadn't worked. She suggested Prolia, brought it in an injected. I didn't research the side effects till a few months later when I started to have issues. What I found out about Prolia is that the # 1 side effect is muscle and bone pain . It also increases cholesterol.

I was told it wasn't the Prolia causing my problems . I had tests and told I had P.A.D. peripheral artery disease. Caused by increased cholesterol in the arteries. Seems to me ,sounds like there is a link. Anyway whether there is or not ,to stop taking Prolia is not easy. You must immediately change to another medication , b/c cessation of Prolia causes spinal fractures.

I now know that I didn't take Actonel properly , and the medication states if not taken properly does not work. I want to go back to Actonel and try again , but now afraid to stop the Prolia ,b/c even when going to another medication , there still is a chance of spinal fractures.

After speaking with my pharmacist , he agreed , once you've been given an injection, if you have side effects , not much you can do, its already in you.

I've looked at all the meds for Osteoporosis, there are many , I mean many all have lousy side effects. I think I've decided the best thing might be to see which of the side effects you would find easiest for you to deal with.

Prolia is in the denosumab family :side effects

drugs.com/sfx/denosumab-sid...

Alendronate is in the Bisphosphonates

side effects

drugs.com/mtm/alendronate.html

There are others that can cause heart attacks and blood clots

For me I am leaning towards the Bisphosphonates family

which is what the med your taking belongs to , don't know what else is in the family

I'm just speaking for myself , for what I have researched online. If you don't have a specialist , talk to your pharmacist , they are more up to date on all medications

[2poodles in reply to RubymyT]

Hi thank you for your reply which is very helpful. I'm already on a low dose of atorvastin for high cholesterol, I really want to have to increase the dose if prolia causes my cholesterol to increase further. I've also read that prolia can increase inflammation in the eyes. This concerns me as I'm at high risk for macula degeneration, I had a DNA test & have the gene for MD. There is also close family history of kidney disease & heart disease so thats also a concern regarding side effects. The decision is not easy, its a no win situation. Thank you for the links, I'll check them out.

[SkittyKitty in reply to RubymyT]

Can you explain why you say that you didn't take Actonel properly? I took it for 5years (2005-10) and it didn't help my BMD at all. I wonder if there is some new info about taking it that we didn't know then.

[yogalibrarian]

There is detailed information on the Bone Health & Osteoporosis website -- bonehealthandosteoporosis.o...

If you go to that page, it will give you an overview. Farther down the page there are link to pages for each of the medications.

[2poodles in reply to yogalibrarian]

Hi thank you very much for the link, I'll check it out .

[avaerly]

I am the same age and in the same situation

Prolia is a last resort, once you start you will be on it forever, The Mayo Clinic doesn’t recommend using it. That’s good enough for me.

The monthly injections Medicare & my supplement would not pay for …..

then the Dr prescribed Fosteum Plus , Medicare doesn’t cover and it’s $5325.00 for 3 months !!!!

Def not taking this.

So, like you I need suggestions .

[2poodles in reply to avaerly]

Hi thank you for your reply. I'm leaning towards not taking prolia. I'm in England so the cost is not an issue to me. The side effects do concern me a great deal but I also worry about fractures in my back. I'm thinking I might ask for a bisphosphonate as at least that can be stopped any time.

[SkittyKitty in reply to avaerly]

You can get Fosteum Plus for much less than that price at Primus Care Direct. I saw this on a Facebook group Osteoporosis Education and Support.

[stacylynnpelle]

Please do your research on the Prolia before you start, from what I know there is a time limit of 10 years you can take it. What are the plans after? Dr Doug Lucas has a great video on his YouTube channel about Prolia. A long term plan for your bone health is the key. You are still young and the future needs to be in the plan not just the immediate time.

I would also try to find an Echolight REMS test. It is soooo much more accurate than the DEXA.

Here is a link to Dr Doug youtube.com/@Dr_DougLucas

Hope he can help you on your journey.

[2poodles in reply to stacylynnpelle]

Hi thank you for your reply. I was also thinking that at my age its probably too early to start something like prolia. The long term plan is on my list to discuss with my consultant. Thank you for the Dr Douglas link, I'll check it out. I have started looking at his videos. I'll research the echolight REMS test, its not something I'd heard of until joining this site.

[stacylynnpelle in reply to 2poodles]

I was 42 when I was first prescribed Prolia, (12 years ago) I could not take oral meds due to digestive issues. I only has 3 injections and stopped them, even now so long after I am starting to see issues with my jaw and teeth. It's scary sometimes, I recently found Osteostrong also. It is very beneficial.

The Echolight is not available in very many places. I know its prominent on the East coast and I found 2 places in Texas that also have it. I had mine done in Dallas and the results were amazing. The Dexa can vary so much depending on machine calibration and tech operation, they are finding its just not that accurate.

This is an article my provider shared with me. Its a very good read

midwesterndoctor.com/p/the-...

Hope all of this helps you.

[2poodles in reply to stacylynnpelle]

Thank you for the article, I'll have a read of it. I'm in England and it seems that echolight is difficult to come by. I all ready have periodontal disease and problems with my teeth. Another reason not to have prolia, I realise bisphosphonates can cause problems with dental treatment as well. I'll look up Osteostrong.

[stacylynnpelle in reply to 2poodles]

I know the echolight originated in Italy so you should do a search might be easier to find that you think. It lifted my fears I was carring around. My DEXA showed L4 at -3.4 and the Echolight was at -2.5. Thats a crazy difference.

Dexa can just have soooo many variables that can change the accuracy of the test.

I am not sure OsteoStrong is international but I will check at my appointment today.

[2poodles in reply to stacylynnpelle]

I've just been looking at the Osteostrong concept as much as it will allow me too, I couldn't find that much accessible information. It looks really good & having done weight training for many years, it makes sense to me. I listened to an interview with Dr Jaquish about an X3 bar. I'm going to research this further.

[stacylynnpelle in reply to 2poodles]

the Dr Jaquish/Dr Lucas interview is a good one if you can find it.

[Met00 in reply to 2poodles]

I think it's actually much easier to get an Echolight (REMS) scan in England than in the US, although you have to be able to afford it as they're only available privately. There are two clinics that do them, one is based in Daventry but runs mobile clinics around the country (osteoscanuk.com), the other is based in Amersham (profortis.co.uk). Osteoscan is more expensive, but you get a full consultation with a very experienced orthopaedic consultant, who is able to advise on the way forward, including diet, exercise, supplements and, if necessary, medication. REMS scans aren't officially recognised by the NHS, although some doctors are more than willing to accept them. I read this week of one lady whose doctor changed her medical records from osteoporosis to osteopenia following a REMS scan. The latter highlighted an error in her DEXA scan, which hadn't taken account of scoliosis of her spine, and the DEXA department subsequently acknowledged this error.

[2poodles in reply to Met00]

Hi thank you for the information. I did see the mobile clinics. They seem to be full until 2025. I think rather than concentrating on my numbers, I'm going to concentrate on my lifestyle & see what additional exercises I can do. I've been listening to Dr Lucas's podcasts as advised by others on this site. I've decided not to have the prolia injection & will discuss this with my consultant.

[Met00 in reply to 2poodles]

They quite often get last minute cancellations at the mobile clinics, so it might be worth asking if it's possible to go on a reserve list.

[DonEnrique in reply to stacylynnpelle]

I would take this opinion piece with a big grain of salt, and check it against other reputable sources.

[stacylynnpelle in reply to DonEnrique]

Like I said above its a good read, I went over the article with my provider and sooo much of it rings true in my eyes. Just my opinion.

[DebStib]

I was on Prolia for 7 years, but was taken off of it with supervision from my doctor. Seven years ago, when it was recommended I start on Prolia for my osteoporosis, I wasn’t informed of the risk of fracture when discontinuing. Please read the side effects and what’s called the rebound effect when you discontinue. You must take a biphosphonate, at risk of multiple vertebra fractures.

[2poodles in reply to DebStib]

Thank you for your reply, I'm definitely looking at the side effects, especially long term. I hope that you are doing well on bisphosphonates and the prolia hasn't made things worse for you.

[DebStib in reply to 2poodles]

Thanks! Yes, I am currently off all meds with no fractures. Eating healthy, taking a bone supplement and daily workouts including weight bearing. I am still being monitored by a physician.

[Screwed in reply to DebStib]

Did you go cold turkey with no relay after your Prolia? How many Prolia did you have?

[stacylynnpelle in reply to DebStib]

same here, no Rx meds only supplements and weight bearing exercise and its working for me as well.