PROLIA

[Deb967]

I had my first shot of Prolia on the 12th of Feb. I got it from my GYN. I am looking for info because I am refusing the next shot. I had RNY 22 yrs ago. I am limited to what I can and Can not take. I heard that when you stop PROLIA. you need a Rebound med. BISPHOSPHONATE. I cant take that med. Is there anyone in here in the same predicament as I? I know I will need to be on something. Im not asking specifically what I can take, Im asking what types of meds are out there. I had my calcium checked before the prolia shot. It was 9.0. I just went for a CBC and my Calcium dropped 8.5. Along with my Kidneys, Liver, and Protein. Hence I take Calcium and protein daily for 22yrs and never had them drop. Thinking Prolia did it!!

[Screwed]

I’m so sorry. Don’t think med field know enough about what Prolia does. I have had 3 injections and want off due to side effects: knee rash, neck and shoulder stabbing pains, joint pain, hair loss in clumps. Never had issues prior to injections.

I’m meeting with a new endocrinologist instead of my rheumatologist. It serves as a second opinion on how to relay off.

Luckily my calcium has stayed above 9.

[HeronNS]

Although initially it was thought that a single dose of denosumab would not trigger rebound osteoporosis, this is, apparently, not entirely guaranteed. I don't know if a shortish course of a bisphosphonate would be a good idea (check with your doctor, and also do some reading), but certainly you should do everything you can to encourage good bone health naturally. As far as I know Vitamin K2 (not K1) is a must, along with the usual Vitamin D3. Have a look at my story in case there are some ideas there which could help in this situation.

healthunlocked.com/pmrgcauk...

Good luck and do let us know how you get on!

[Deb967 in reply to HeronNS]

I am on daily Vitamins and Protein die ro Gastric Bypass for 22yrs. Ans Osteoporosis still got me.

[Deb967 in reply to HeronNS]

I am on Calcium, Vit D. Vit C. Magnesium, zinc Multi Vit for past 22 yrs die to Gastric bypass. I never miss a dose and never had problems with my bloodwork till now after this first Prolia.

[HeronNS in reply to Deb967]

Interesting. I wonder if there's a way to report this possible change in your metabolism? It seems to be yet another "side effect" of the drug.

If you aren't already, do look into adding Vitamin K2 to your regimen. Lots of doctors still don't know about it, although dentists often do. It is very important for making sure calcium actually gets to the bones, which Vitamin D can't do although it's necessary for our bodies to absorb calcium. Unfortunately our modern diet tends to be lacking in Vitamin K2.

This is a good introduction:

healthline.com/nutrition/vi...

[Siamang]

I stopped after 1 shot with no problem. Side effects gone in a few months. I stay with plant based calcium, D and k2 plus working on weights and exercise. Last bone density improved from osteoporotic to osteopenic. It’s nearly 6 years since the 1 and only prolia.

[Tess_Morana in reply to Siamang]

Hello. Thanks for sharing your experience. Could you tell me what is your excercise routine?

[Siamang in reply to Tess_Morana]

I walk using Nordic walking poles (helps posture) 4 x week. Do Pilates 2 x week. Attend a weights circuit for seniors each week. Do aqua aerobics class 2x week. I’ve been active all my life. I also swim laps at pool.

[Tess_Morana in reply to Siamang]

I’m afraid I don’t have enough time to do all that 😁. Anyway, I love Nordic walking and should start with weights. I’ll try to follow your routine. Thanks so much for your reply 🙂

[Siamang in reply to Tess_Morana]

I’m retired plus all the group activities finish with coffee with friends!!!

[Raleigh59 in reply to Siamang]

Never heard of weight circuits for seniors but I am probably doing the equivalent with a coach at the gym.

[Siamang in reply to Raleigh59]

It’s just a circuit of exercises the trainer sets out and you work around stations spending a set time on each exercise station. There are options as to which weight you use!

[Deb967 in reply to Siamang]

I too just had 1 shot but I need to be on something. I had Gastric Bypass.

[HeronNS in reply to Siamang]

Very interesting result, well done! My friends who helped me out years ago both took Vitamin K2, which I hadn't heard of before, and I credit it for much of my good news.

[walk21]

So sorry for you, you are in a difficult place. I stopped Prolia after only one injection when my favourite strontium ranelate became available again. Months later I had bad vertebral fractures and that was during Covid so I got no further information. I have been ok since with my usual routine of vitamins and exercise

[Raleigh59 in reply to walk21]

Are you still on the strontium renalate?

[walk21 in reply to Raleigh59]

I have been taking it since 2020, but sadly it is no longer available. I hope it will be back in the Autumn. If not I don't know what I will do

[buddy99]

My endo wanted me to go on Prolia. I looked into it and really was not impressed. I called AmGen, the company that makes Prolia, talked to their medical advisor and was told that they could not recommend Prolia in my case. So, I am glad to say, I never agreed to the injection (and also never went back to see that endo ). This year (2024 ) in January the FDA added a Boxed Warning fda.gov/safety/medical-prod.... While this probably does not apply to you, I think it is food for thought and ties in with your feeling that Prolia caused your drop in calcium. If you look into the research, Prolia is really also not that efficient in preventing certain fractures (such as hip) and rebound after stopping longer term administration is rapid. Other than being an avid follower of research, I have no medical education (only personal experience), but my advice would be the same as above. An appropriate diet (whatever that might mean for you), supplementation after applicable testing and sufficient exercise could make a big difference. I walk and/or do weight circuits every day except Thursdays, which is my rest day, while I still work (less time for extensive exercise), but looking at a similar routine to Siamang's for when I retire in June.

I was glad to see that   Siamang managed to stop Prolia after one shot without any problems and got rid of all the adverse effects within a relatively short time. That there was such a good improvement of bone density with Siamang's regimen is very encouraging. I would think, that making a similar plan, that can be fit into your life, would be helpful. It might not be easy, though. When it comes to health nothing ever seems to be. Sigh! I hope you can work things out to your best advantage. Best wishes to you for much improvement.

[Deb967 in reply to buddy99]

Im going to need to go on something after I stop as I had Gastric Bypass yrs ago.

[buddy99 in reply to Deb967]

This is just it. I (and I assume everybody else) can only speak from my own experience. We all have different bodies with different needs. Not always do we find the advice or information or even the research that pertains to us. And, fortunately, sometimes we do. It can be a long and thorny way, that might or might not get us to where we would like to be. I am a big fan of Marcus Aurelius, who said, "Everything you hear is an opinion. Everything you see is a perception." This is how I try to approach everything. I very much hope that you will find the best possible opinion and way to go for yourself. Best wishes.

[Deb967 in reply to buddy99]

Maybe thats what I should of done before taking that first shot of prolia call Amgen . I didnt know GBS ppl cant take it.

[buddy99 in reply to Deb967]

Well, how would anybody know that this can be done. There were so many, many things I did not know when I laid my health solely into the hands of doctors. I'm convinced that there are a million things I still don't know. It's a learning process. At my age I'm starting to run out of learning time, though. I wish I had started earlier.

[Mavary]

hi I’m on prolia and they’ve told me it will be for life.

[Yule2]

Prolia was the biggest mistake of my life It reacted with other meds I was deathly sick for three months because there's no opting out once you get the shot. You have to live it

[Posy-White]

Hello Deb967

I understood that after just one injection of Prolia, it was fairly safe from rebound fractures.

Can I ask when you say you are limited in what you can take do you mean orally? I'm am limited with what meds I can orally take so 'my choice' of Osteopororis drugs are limited.

Prolia (denosumab) doesn't stay in your bone for long- it wears off quickly 6 months after the last injection, so you have got time to think about your next step. If it is you are limited to non oral meds then then there are a couple that are yearly infusions (zoledronic acid brand name Aclasta is one and sorry I can't remember the other / others ) : and two or three that are daily injections (Teriparatide- parathyroid hormone treatment or Romosozumab (Evenity) and again sorry can't remember the other )

Are you able to look at the ROS website and download the leaflets on the different meds - they give details of the different drug treatments available and include side effects, who the drugs are licensed for etc. Then you could always come back to the 'bone group here' and ask for feedback on the different drugs.

Good luck

Posy White

[Deb967 in reply to Posy-White]

Im limited on what I can take because of having Gastric Bypass yrs ago. I did search look what I can take and I think I can do Bisphosphonate IV.

[Deb967 in reply to Posy-White]

I cant Get to ROS site. Can you sent me the Link? TY

[Posy-White in reply to Deb967]

Sorry Deb967 - only just picked up my messages Re ROS link -

The Royal Osteoporosis Society

theros.org.uk/

click Information and Support - then click Support for you - and you’ll see 'fact sheets, booklets and information films'.

Below is copied inforation you'll be able to download -

Bone-strengthening drug treatments

• About osteoporosis and weaker bones

• Alendronate

• Denosumab

• Hormone replacement therapy (HRT)

• Ibandronate

• Raloxifene

• Risedronate

• Romosozumab

• Strontium ranelate

• Teriparatide

• Zoledronate

Rare side effects of some drug treatments

• Osteonecrosis of the jaw (ONJ)

• Atypical thigh bone fractures

Scans and tests

• Getting your bones checked to keep them healthy

• Bone density scanning

• Bone markers

Also sorry you're getting confussing information about Prolia (Denosumab )- If a drug doesn't suit you I personally think "I need to find something that does suit me!"

A number of people on this site have had bad experinces with various drugs, with Prolia (Denosumab ) being a regular one that has caused issues for some people.

I was on Prolia from 2012 - 2017 when I started on it I lived in an area with a large teaching hospital, I moved mid treatment and the small hospital. The smaller hospital wasn't up to speed on rebound fractures in 2017. When after 5 years of treatment on Prolia with no real issues my scan showed I no longer was in the osteoporosis range but mid osteoperina range so the treatment was stopped without a covering treatment. I unfortunatly had 8 spinal fractures, 3 months after the treatment was stopped which have left me disabled and unable to work. From 2018 - 2020 I had daily injections of Teriparatide; I was with a different but large teaching hospital, who I have confidence in; 2020 I had an infusions zoledronic acid, but had issues with my eyes a rear side effect. After a lot of discussion in 2021, because I'm so limited in what I can take I re started Prolia - I have not had any issues and will be interested in seeing what my bone density looks like after my scan in September. That said I not trying to get you to take it - Prolia clearly doesn't suit a number of people.

Good luck in finding something that helps you and doesn't cause issues.

Best Wishes

Posy White

[Deb967 in reply to Posy-White]

I just watched a video on Youtube about Prolia and they said nothing bad about it. UGH!! So confusing

[fmkkm in reply to Deb967]

Who produced the video?

[Deb967 in reply to fmkkm]

Not sure. It was a Dr on Youtube. It popped up. I think I saved it.

[Deb967 in reply to Posy-White]

Not True. You still need a rebound.

[Deb967]

What will happen if I dont talk anything after I quit after the first one?

[Siamang]

will be interested what you decide to take. Even though my last bone density has me osteopenic for hip and normal spine GP wants me to try Risedronate. Says if doesn’t agree with me is east to stop!??

[Deb967 in reply to Siamang]

I cant take Risedronate because Im on Omeprozole for my Thyroid.

[Hidden in reply to Siamang]

Doctor prescribed Risedronate 150g tablet for my husband. He was told to take one tablet a month to start. Has taken one and no negative reaction.

[Deb967 in reply to Hidden]

I cant take that due to Gastric bypass.