Prolia nightmare

[lanzarote123]

Hi I started on Prolia 10 weeks ago and had so many problems on it I feel I'm living in a nightmare - I will never take it again - I was on risedronate for 4 years before this and didn't have many symptoms with that but was then advised to go on Prolia after my dexa scan showed slight bone loss I have osteopenia and not osteoporosis - I don't think I should have been prescribed Prolia

[lolly64]

I don't think you should have either when I was diagnosed with osteopenia they just gave me calcium and d3. Good luck

[lanzarote123 in reply to lolly64]

Thanks lolly I won't be having the 2nd injection of prolia I will discuss with my doctor the best alternatives and at least I can be armed with the info from this site to guide me I'm so pleased I found it I don't feel so alone now

[Kaarina]

I do not think you should have been prescribed prolia either but that reply does not really help you now, does it? Do you have a good diet, an exercise regime and are you taking magnesium and K2? Eating prunes is meant to be good for osteoporosis. Have you had your Vit D levels tested at all?

[lanzarote123 in reply to Kaarina]

Hi I am taking calcium tablets with vitamin D prescribed from my doctor I do some exercise try to go swimming as much as I can and trying to eat as healthily as I can - didn't know about the prunes will try that I am not having another prolia injection after this 1st one so will have to discuss with my doctor the best way to go forward I'm so glad I found this site I don't feel so alone now and have learned so much I wish i had known about this site before agreeing to prolia

[Kaarina in reply to lanzarote123]

Are you able to do any weight-bearing exercise? Swimming is good but it is a not weight-bearing exercise. Are you able to go walking? Some of us choose to drink Kefir.

I have lifted this link from the NOS publication on Prolia: nos.org.uk/about-osteoporos...

4. Continue to take your treatment regularly and discuss with your doctor the plan for an alternative drug if denosumab is discontinued.

The effects of denosumab wear off quickly 6 months after the last injection and ‘rebound fractures’ of the spine have been reported in people who have stopped denosumab and haven’t then received an alternative bone medicine. For some people, denosumab might be used for a decade or even longer but there is no formal guidance about how long the course should be. It is considered good practice for your doctor to review your treatment after a few years for advice about what is best for you based on your individual circumstances. Usually, if denosumab is stopped, you will be prescribed another drug such as a bisphosphonate for at least a year to help keep your bones strong. If your risk of fracture is considered to be low, you may not need another treatment although some plan to monitor you would still be important. Experts recommend that you are referred to a hospital specialist for assessment and advice if denosumab is going to be discontinued without a follow-on treatment.

Denosumab should not be confused with the bisphosphonates, alendronic acid, risedronate, ibandronate and zoledronic acid, which stay in bones, often for a number of years, and may continue to help keep bones strong even when you stop taking them. This is why ‘pauses’ in treatments or ‘drug holidays’ have sometimes been recommended with bisphosphonates. This is NOT recommended with denosumab.

[Kaarina in reply to lanzarote123]

Here is a past thread on prunes which you may find of help. It also mentions kefir. healthunlocked.com/boneheal...

[lanzarote123 in reply to Kaarina]

Thank you that information is great I can walk a little with a walking stick and do light exercise at a local gym but not as often as I would like - I am 69 and have arthritis in hips and knees but since prolia shot I have been in a lot more pain as well as having 2 ear infections/sinus infection and pains in gums/jaw 1 broken tooth and now a loose tooth which I have been told will have to come out - which I am dreading I was on Alendronic acid for a few years before the Prolia with no side effects so I might ask about going back on that just wish I'd never had that 1st shot

[Kaarina in reply to lanzarote123]

Yes, as long as you get straight back onto the AA with which you suffered no side effects you should be OK. Do not let your doctor dilly dally when you are nearing the end of the first prolia/denosumab jab time.

nos.org.uk/about-osteoporos...

You can always show your doctor the above link (No. 4) should he not be aware about possible rebound vertebral fractures if stopping Prolia/Denosumab without going onto another OP drug like AA pronto.

[antiP2219 in reply to lanzarote123]

I wish I'd never had a first shot, either!!

[Prolianightmare]

Its outrageous you were prescribed Prolia. Were you warned of theside effects and does your doctor know about the terrible rebound fractures that are occurri ng when people come off prolia even fir a very short time.. You will need to go back on something now after your 6 months prokla injection expires.Maybe what you were on before until the prolia effect wears off which can be a while. Unfortunately you cannit just stop prolia...You really need drug holiday as soon as possible after all that.

[lanzarote123 in reply to Prolianightmare]

Thank you for the info I was given a printout of the side effects and ONJ leaflet but it said the likelihood of ONJ was 1 in 10,000 and didn't mention about loose teeth or jaw pain which I now suffer from but on this site have seen a lot of people mention about tooth problems

[antiP2219 in reply to Prolianightmare]

REsearch says not a problem to stop after only one injection. Fracture problems for stopping after two or more injections.

[diana9]

I had a massive reaction to my one and only prolia injection. Covered in itchy red rash, painful bones, muscle aches chest pains and flu like symptoms which last for 3months. Dr agreed that it was caused by prolia and not to have another one. I have extremely bad osteoporosis resulting in broken legs,, ribs,spine,fingers and hip fracture. I am not on any medication at the moment as react badly to them all and Evista and Strontium can't be taken if ever had pulmonary embolism of which I have had every time I have broken bones. So I just take calcium, vitamin D,K2,B,Magnesium,probiotic,tumeric, weight bearing exercise and healthy diet. Was not told that it is possible to fracture after stopping Prolia. 3mths after I was meant to have prolia so hope I don't have any problems. I also eat prunes as heard they are good for bone health. Going for dexascan in June this year so will find out if density has got worse. I certainly hope not as last one was told I have 80yr old bones I am 58!

[deborahwin in reply to diana9]

I took Prolia May 2018. It's Jan. 2019. Still suffering from side effects. Itching; burning; dryness with my skin. Total nightmare...

[antiP2219 in reply to deborahwin]

My one and only Prolia shot was mid-April 2018, and I am still suffering bad side-effects, too!~

[antiP2219 in reply to diana9]

I have had awful side effects from only one Prolia shot! Never again.

[WorryProlia]

I'm also going to stop after my first shot in December (was almost forced on to it). Right now taking Calcium, D, Magnesium and trying to do zumba once a week. I feel like I'm back on menopause all over again, can't sleep with hot flushes from 11:30pm to 3am every night (no fever). I'm really scared to stop, but I will. Can't have prunes as my sugar levels are high. I was told by a friend to buy a Whole Body Vibration machine which is supposed to be like weight bearing exercise. Also I bought some stem cell activator supplements because Prolia is supposed to stop your stem cells from generating, and not only bone cells but liver cells and others too. I've also lost a lot of hair and am taking Nutricaps but it has not helped yet. I'm 64 but feeling a lot older.

[snodog47]

You are very fortunate your body alerted u after just one injection; it took me three before I realized the defects to my immune system...if you have any luck pursuing legal action, pls let me kno!!!!

BP

[andie55]

You are very smart to go off. I got four injections. It wasn't till after the third one that I started getting weird things happening in my mouth. I had no clue it was the Prolia and stupidly got a 4th injection, at which time, everything got nightmarish and the doctors just acted like I was crazy to blame it on Prolia. I did not take my October scheduled shot. I have not even gone back to my oncologist at all. I feel like I am alone on a boat! It's January and I am still living the nightmare. Some people think this is a conspiracy by big Pharma. I am prone to believe it after having my doctors tell me "stay off the internet and don't listen to all the crazies at the forums" Why the heck don't they want to protect their patients??

[AnnieW55 in reply to andie55]

I don’t want to cause you any further worry as I am new to all this and not on any medication. But having stopped the Prolia have you gone onto another bone med (you don’t say). I have seen that Prolia should be followed by other meds to avoid rebound fractures. It may be that you are ok after having only a few shots, I don’t know. If you use the search (word is on the banner just before the posts start) I’m sure you will find Information. Very best wishes

[andie55 in reply to AnnieW55]

thanks for your concern, Annie. I do not trust the medical community any more. I have seen alternative docs (ND's) who advise me to do things to get Prolia out of my system. It's a lie my oncologist told about how long it stays in you. I am trying to think positive, eating VERY good with fiber, calcium, K, D, etc etc. I took myself off estrogen blocker and am using natural ones (DIM and Indole Carbinole) They put me on Prolia because they said estrogen blockers would prevent me getting calcium ( I had breast cancer 3 years ago, that's why the estrogen blocker). But a female internal medicine doctor with my same type of bone scan looked at my chart and said, "why are you on Prolia?" This really raised a red flag for me. In the end, she supported her fellow doctors and told me, "Keep a food diary. You must be allergic to something. " Give me a bloody break. I saw 7 different doctors, and only the last two (ND's) supported what I know to be true. The sores in my mouth (now mostly gone) and the lining of my lips being way too soft, the strange current rushing through my body. It's all Prolia. I don't need to be a rocket scientist to guess that. I eat a ton of veggies daily and other good foods. I have never been stronger in my immune system and other things like blood pressure, etc. I am just going to follow the addage: you are what you eat. And keep crossing my fingers. Best of luck to you. And to us all!

[AnnieW55 in reply to andie55]

Best wishes to you. I’m guessing you are in the USA - have you seen the site inspire.com? There’s lots of info and support there too. Some of the people here are also on that site.

inspire.com/groups/national...

[andie55 in reply to AnnieW55]

thanks, I will have to check it out. I really want to see Prolia removed from the market. I cannot believe it is allowed and I don't believe ANYBODY truly understands its power or how long it lasts in the body. Yes, I am in Utah, a place where I can't seem to find a well-informed doctor! I hope that you are recovering!

[andie55 in reply to AnnieW55]

Your link just took me to "pages not found" Was this a place where we can find answers to our questions?

[Kaarina in reply to andie55]

inspire.com/groups/national...

Is this link OK for you? It is a forum.

[AnnieW55 in reply to Kaarina]

Thanks Kaarina.

[antiP2219 in reply to AnnieW55]

You are okay to stop after only one shot. Maybe two would be okay, also, although info online says risk increases for fractures after 2.

[Siamang in reply to antiP2219]

My GP told me she predicted 2 injections of Prolia would bring my bone scan back to osteopenia!

However, I have some dental issues to be addressed so refuse to have 2nd needle not take any other meds. Supplements and exercise program stepped up!

[TommyJohn]

I have severe op - readings from -3 up to -5 - I started with daily Protelos for 2 years - then progressed to Prolia twice a year. This Feb will be my tenth injection.

First off I had 4 fractures from 2008 to 2010, before commencing treatment. Since I began attending the specialist and started on the Protelos, thankfully I haven't had one. I'm probably one of the 99 percent that doesn't suffer side effects.

I cannot see how someone with osteopoenia was prescribed Prolia. The effects of Prolia are to wash away the old bone and build up new ones (osteoclasts and osteoblasts)

A great pity that the old site NOS stopped the letters section

nos.org.uk/ great information here

Cheers

Tommy

[antiP2219 in reply to TommyJohn]

I understood that Prolia stops cells from absorbing old bone, so old bone builds up and that's why risk of fracture from brittle bones after you stop, and why better reading on dexascan.

[lea57-49r]

I'm shocked that you were prescribed this medication for Osteopenia. I'm in my sixties with Osteopenia and have been told to ensure I take in a certain amount of Calcium along with Vitamin D3. I have now added Vitamin K2 to that and try to get regular exercise. I'm also looking in detail at the additional information that you have been given in these answers.

[Jh521967]

Hi. I too feel I am living a nightmare from Prolia. I was diagnosed In 2017 with osteoporosis in spine and osteopenia in hips. I was 50 years old then. My doctor talked me into taking Prolia, stated that it was a excellent drug with only one side effect that rarely happens which was necrosis of the jaw. Wanted me to get the shot immediately that day. Normally I would look into it, but this time I didnt. I received 2 injections before realizing my issues were caused by drug. I had rash, sciatic pain, every joint in my body had pain. The worst is I developed within the first 6 months a huge heel spur in my left foot that grew so big I could not walk anymore and it had to be surgically removed. I also found out the same time I developed necrosis in my right knee and it got so bad so fast I just had a total knee replacement. I have never injured my knee. I just had multiple blood test done to rule out other reasons of bone necrosis and there are none. I See commercials all the time that say its for women that are POST menopausal. I just started menopause. Im wondering if I was too young to receive this and that my body was not ready for it. Prolia has caused havoc in my life.