How many people have experienced the nasty sid... - Bone Health
Thank goodness strontium ranelate (Protelos) will be available again in January. Of course it comes with risks as all drugs do but to my way of thinking it is the best one out there if one does not suffer with cardiovascular problems. I was devastated when this OP drug was taken off the market in the UK last summer.
It is totally beyond me why Prolia is still available.
I was due for a 3rd shot December 1st 2018 & my leg started hurting a few months after my 2nd shot. I found out I had a fracture November 14th 2018 & surgery was rushed & done November 28th, 2018. I live in fear now & literally feel like a china doll waiting to break because I have heard about the rebound fractures that can happen now that I am no longer on this drug. I wish I had never agreed to take this drug. I was never told the serious side effects of this drug. I was only told about the good it could do. Even when I decided to go off the drug before I knew I already had an atypical fracture I was being told it’s rare to suffer bad side effects. The osteoporosis clinic in London seemed just as shocked as I was that a fracture had already occurred. The MRI confirmed the fracture & they could tell it was due to medication.
Did you feel a sudden sharp pain in your leg? I read so many stories from people who have, not terrible pain, assume it's a muscle injury, and then find out it's a fracture. Though I'm guessing your leg must have REALLY hurt if it was fractured. I've had a stress fracture in my metatarsal (too hard training but also OP sufferer - currently panicking about sore back and going back to the doctor on Thurs to ask for an xray, an, if that shows nothing, an MRI). Has someone reported the serious adverse event of Prolia in your case? You should find out - if they haven't, you can report this to the MHRA I think (I moved to Netherlands nigh on 5 years ago but I think that it what you can still do). The more adverse effects this drug gets, perhaps, the sooner they'll take it off the market. it's TERRIBLE that you were not fully informed. I really feel for you. I'm seeing my bone specialist, here in NL, on 21 jan to discuss treatment. I'm 46. She has already agreed that biphosphonates etc are too aggressive for me in my situation and we'll probably be going down the hormone route. It makes me so angry that people are persuaded to take Prolia. I hope you'll stay break free from now on.
I actually went to my nurse practitioner in September when my leg just didn’t feel right. She said to me I must have banged it. I was asked if I thought it was muscle or bone & I said I feel it’s bone because it felt deep. It did not hurt all the time. I was walking a lot & continued to be active.
It wasn’t until Monday November 12th I really thought something is not right. I was cleaning & my foot hit a small piece of moulding on the floor & I winced because the pain shot to my hip. The same thing happened the following day when I was raking leaves. I brushed some leaves out of the way with my right foot & again I felt this shooting pain. When I was told it was a fracture on the 14th I was told to stay off that leg as much as I could till surgery was booked. I am asked often when nurses come in to help while I am recovering how I broke my leg & they are shocked when I tell them it’s due to medication & they wonder as well why it is still on the market. I plan on telling who ever will listen. I do not want anyone else to suffer from this drug if I can help it. I live in Sarnia Ontario Canada. I am unable to work & have no money coming in & no benefits. I have amazing friends who are helping me get through this difficult time.
I am sorry to hear you are so young & experiencing osteoporosis. I was in my early 50’s. I am now 63 but never felt my age till now. ☹️
I am determined to get back active however I fear what is in store for me. I am not sleeping well & I know it’s important for me to get more sleep to heal. I pray often that I do not have any more fractures or I pray for strength to get through all this. So far I can honestly say I am not suffering from any great pain. My leg with the rod is stiff when I first get up. My son who is a nurse lectures me to slow down & don’t push quite as hard as I am doing. I just want my life back. This has been a real eye opener & I am trying not to fret the small stuff anymore...
I have had seven fractures in my spine over the last 18 months. One at a time. Spread out between 6-12 weeks. Last one was October 2018. I still have severe pain if I’m on my feet more than about 30-40 minutes. These are spontaneous rebound fractures because I discontinued the Prolia shot due to aching pain in my arms and legs. Dr told me to go on Reclast but I was scared of it so I didn’t. I don’t understand why Proliais still on the market. No one has done an investigation to see how many people have suffered fractures as a result of taking it. I hope there is a class action law suit here in the states but have not heard of one yet.
I just cringed when I read your message. I don’t understand why it is still on the market either.
I don’t know how many of us have to suffer before something is done about that drug.
I live in Canada & from what I understand there is not one started here either....
I feel so bad for you. I can understand your fear as I have fears of going on any pharmaceutical drugs especially to do with osteoporosis. I truly feel like a china doll waiting to break.
Ive had multiple rebound fractures from stopping prolia. No warning given They are still not warning people before they go on it any many medicos do nit even know. There needs to be a worldwide alert similar to car recalls when tbey find something dangeroudls..mass education of doctors abd pharmacist. I would love to join a class actio...
I’m so sorry to hear this
I’m on my 3 rd prolia injection and I’m suffering severe pains all over my GP insisted it’s not due to prolia but I know it is I can only stand for a few minutes as I’m in agony . I’m afraid to stop it because of rebound fractures. I’ll go back to the consultant who prescribed it and see will he listen to me as no one else will . I knew I never should have started it . I live in Ireland
I understand your concern. I had two injections & about 3 months after 2nd shot I experienced discomfort in my back & right femur. I ended up having an atypical femur fracture & I ended up having emergency surgery & a rod was put in from my hip to knee.
My world seems to be turned upside down. I pray I will not experience more fractures. The osteoporosis clinic is keeping a close eye on me.
Hopefully I will know more info when I return to see surgeon Jan. 8th, 2019.
What I am reading here is SO terrible! I refused prolia out of fear of side effects. My endo doctor said "shouldn't be any side effects". NEVER mentioned rebound frac possibility. I asked him if I'd have to be on it for a lifetime as I had some vague notion about the rebound fracs. he shook his head Yes. THAT tells me he most probably knew about the rebound fractures! It is beyond belief that women are being steered onto this dangerous drug and not being made aware of the dangers. I'm glad I refused it. Yes I am very fearful for my bones in the future but I am more fearful of horrible side effects. I just finished 2 yrs of forteo with no gains in bone density so that helped me decide to refuse Prolia. I do not think any of these bone drugs result in long term great results. They are doing so much harm!
Really awful for you, am so sorry. All these pharma companies are interested in, is money. Emgen the makers of this poison Prolia gave a warning in January 2017 that it has to be a lifetime commitment to avoid rebound fractures, but there are ladies suffering fractures whilst taking it. I believe there are still thousands of law suits pending against Merck the originators of AA.
It’s just sad that they don’t seem to be concerned with the ones like me that it affects in a bad way. I wish I would have taken my chances with treating osteoporosis with natural ways & exercise. I even had voiced my concern about any negative side effects before I went on Prolia but was reassured the benefits would outweigh the negative.
I had an active life walking, hiking, biking & swimming. I am getting back on my feet however the continuous anxiety about dealing with the rebound fractures that occur with Prolia is affecting my emotional wellbeing.... 😔
I was using my phone and hadn't realised this part of HealthUnlocked was run in conjunction with the NOS. I am afraid their hands are tied and will only advise whatever they are told by Gp's and the like. The NOF is a wealth of information and a much better forum in my opinion inspire.com/groups/national...
I am experiencing joint pain in my elbiow & knees & now not sure if it’s more side effects from Prolia or just osteoarthritis.
I am thankfully bouncing back from the femur fracture caused from Prolia. I often wake in the night still feeling anxious where this drug could take me with the rebound fractures. I feel it’s a nasty drug & people should be very aware of its terrible side effects.
I was only told about all the good it would do for me. When I read the booklet on Prolia the unusual femur fractures were not listed under side effects. Femur or thigh pain was listed but I didn’t find the unusual fractures till I got home from my intramedullary rod surgery, The unusual fractures were listed at the very back of the booklet in half the print size which to me is very misleading. It should have been listed under side effects. It’s like they hide the warning but have it in there to protect themselves. I think doctors should be warning their patients of the risks of fractures just like my surgeon had to tell me the risk of my surgery.
Hi, I've only just discovered this forum. I had my 6th injection of denosumab (prolia) in September 2017 & then was inexplicably put on a drug holiday by the hospital as they said that the DEXA scan (December 2017) showed good bone density levels, and they would review me in a year's time. The first of 8 spontaneous vertebral fractures (within 3 months) was in August 2018, 2 weeks before my daughter's wedding which I only got through with the aid of a morphine-based drug. I used to be a reasonably fit & active person. Now I'm very restricted by pain despite two vertebroplasty/kyphoplasty procedures. I had a zoledronate infusion in November and am waiting to hear about teriparatide as my bone density is now so low that I qualify for it.
So glad I’ve seen this post, as I’ve been recommended to consider either annual drip treatment of Zoledronic acid, or 6 monthly injection of Denosumab! After reading posts on here, I won’t be accepting either. I was taking Alendronic acid for a few weeks, but stopped this due to pain in back and not being able to stand for long periods. I kept telling myself it was my imagination, but obviously not! Thank you for such an informative thread. Candy😊
I wish I would have seen this site before I started osteoporosis drugs. Interesting how doctors say don’t believe everything you read on the internet.
I feel every one that posts on here has a story to tell like me & we just want to learn the best thing to treat our osteoporosis with.
My doctor told me last week he still feels Prolia is a good drug & that I just have very bad luck. I am also being told that they feel the Actonel was probably more apt to have caused my femur fracture than the two injections of Prolia. Whatever drug was the cause it has thrown me for a loop.
Good luck to you with your choice of treatment.
I am going to try my best to eat properly & exercise along with lifting weights. My orthopaedic surgeon said to cut out sugar.
Hi, Funnily enough when I complained of severe back pain when taking the Alendronic acid, I was offered that it could be abdominal issues impacting on my back. However I knew how it was affecting me! Yes I think eating healthily is a good idea, but my weakness is sweet things, so I must work on that! Thanks for your reply, this is such a learning curve. 😊
Good luck Candy
All we can do is learn from and support each other on here. It’s reassuring to know we are not alone with these bone issues. I still find it hard to believe I had a femur fracture & think it was a bad dream however my scars on my leg remind me it’s not....
I am determined to get back to being active. I am slowly getting less anxious & face my fears & live life again. 😊