Success with Prolia

Hi

I have been advised by my doctor to start having Prolia injections.

I have been advised of all of the side effects but as my bone density in the spine is now - 2.5 I need seriously consider taking the drug.

I therefore have a few questions I would like to receive your feedback for;
1) have you had 2 to 3 injections of Prolia and if so has it improved your bone density.
2) what are the major side effects experienced?
3) if you have been unhappy with the drug have you been advised to take any alternatives? (I have already been on Protos2 and Fosimax and have been allergic to both)

Your response is appreciated.

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23 replies. Join the discussion

I got my second Prolia shot in February and I am due for another one in a few months. I will get my bone density scan in December, so I don't know if it's helping or not. It was my only choice left since I'd already been through the Fosimax, the 2 years of Forteo injections (which worked GREAT in increasing my bone density, according to the scan), that hateful Reclast for 2 years (which reduced all of my gain with Forteo but 3%!), so now I am, obviously, hoping Prolia works. Sorry I can't give you a number yet. I haven't had any side effects from Prolia, except for back pain, but that may be due to my scoloiosis and wearing old built-up shoes (2" on the left side only).

I talked to a nurse case manager from United Healthcare yesterday for about an hour. She is going to try and get a prescription for a new orthotic shoe (pair of shoes, actually) so that I won't have to pay $300 for a pair of shoes again. Naturally all the shoes are ugly, but my height discrepancy could be causing the pain, not the Prolia. I think Prolia is a good medicine and I'm hoping the numbers prove me right.

I wish you the best. God Bless You!

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Thank you for feedback it helps to get your personal view with this new drug Prolia
please keep in touch and let me know your results after you get your next bone density test hdone in december
best wishes always

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Julie, please be careful and cautious! -2.5 is not that bad...................still in osteopenia range, I believe................and my feeling is, a score like that does not warrant the toxic osteo drugs, which you have already had problems with (allergic) .................Prolia is yet another bisphosphonate in the same class as the others..................... My scores were avg. -3.6 and I improved greatly by taking strontium calcium vit D etc. To me it sounds like you have been scared by your Dr. into thinking you are about ready for a wheelchair or nursing home if you don't take Prolia.................. my drs. did the same sell job but I didn't buy it and sure am glad I didn't. Too many side effects and reduced quality of life with the bisphosphonates........................and, evidence pointing to the fact that they create hard brittle bones over time. Please do lots of research and don't rush into yet another problematic, caustic drug. Why not try a natural route first and see what improvement may come about? If you are not fracturing all the time, as my Dr. said, no rush to get on those drugs!

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when i did some research about prolia, ( bd-3.6), i saw , on their web site, that 19% of the people using it had SERIOUS side effects. that's almost 1 in 5. i thought that was way too high for me. -2.5 seems not bad at all. i think docs mean well but i don't think they really have done much personal research and are just relying on the drug companies. good luck with your decision making.

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Hi Julie, I agree with debf who responded that 2.5 is not all that bad. You should not be forced to jump in to the drug.
Doctors do not do their homework ...... they get your DEXA scan and they want you to jump into taking the drug Prolia
The chief reasons for people stopping the medication included: breast lumps, severe constipation, and bladder infections. Doctors do not always do their homework and others are on top of the problem. Be careful, have you had any thyroid test? How much vitaminD3 do you take?This is not a drug to be taken lightly. I have a friend who is taking the drug but she has two spinal fractures
and does not want to get anymore. Trust me her scores are not 2.5, she would be happy to have that 2.5. Take care but get
other opinions from other doctors.

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Julie, I forgot something that is important . 25% of the people in the clinical trials had non-serious side effects. That
is pretty significant. What the study considers non- serious is pretty serious t o me. Although this drug is in Europe and cAnada, people do not jump on board so quickly for the medication. I The 25 percent number is the medical guidelines that is attached
to the advertisement that is published.

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I don't think that -2.5% is bad enough to warrant another poison. I mean, drug. Just say NO! Go to askapatient.com and put in Prolia and read the reviews. I'd have to be on death's door to put any of these bisphosphonates in my body!

Isn't that an injection? And what happens if you have an adverse reaction to it? I think it's like Reclast in that regard. There is no turning back.

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I agree -2.5 is not bad enough enough to go that route. I would look into the alternatives mentioned above. @debf, how long did it take for you to see results? You said your avg was -3.6, what is it now? You said you've, and i've noticed others had good results with Strontium. I'm going to discuss this with my Naturopath...

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Hi I was advised to take prolia by my endocronoloist who is quite an expert and named top dr. in many publications in US- I did have forteo- had a really good reaction- my bone density= now my score is getting down again- not good- they can't figure out why- my hips are normal- strong scores- the spine only is bad. I am considered very high risk for a fracture- I am scared- but I am more scared by the possible reactions to the drug- I take fossamax every week- exercise- eat low acid foods- don't smoke- or drink- organic foods-
I did better when I took tamoxifen for 5 yrs( scores didn't drop so much- but after having a breast lump removed- I had to take that- but it had a good effect on my bones- Now I had to stop( only a 5 yr course)- so the bone scores dropped too.
I can't take evista- so they are really considering Prolia
Anyone taking it?? What are the side effects??? would really like feedback on this.
Thanks so much

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We are all in the same boat
hang in there ........... all this feedback
will help us all to make the right choice
best wishes always
Juliemarie

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when reporting side effects it is important to note, almost the same number of placebo takers in the prolia study had similar side effects. here is an example, the 2nd is the placebo:
Back pain 1347 (34.7) 1340 (34.6)
Pain in extremity 453 (11.7) 430 (11.1)
Musculoskeletal pain 297 (7.6) 291 (7.5)
Bone pain 142 (3.7) 117 (3.0)
Myalgia 114 (2.9) 94 (2.4)

I just dont want to frighten anyone from a drug I havent taken and dont have a wealth of info on.

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Prolia is not a bisphosphonate.

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IN RESPONSE TO: debf, VishnuvitaIt and Landmark (replying to Julie). It is interesting reading these blogs and I agree with you. The meds might help, but they all have side effects resulting in poor bone structure (brittle/porous/cone like), etc. I am in my 20th month of Forteo, so far, no side effects. Once I complete my 24 months, I will go "natural." I believe taking the proper forms of Calcium, Magnesium and Vit. K plus exercise will be the path I choose. FYI: Do not take calcium with other vitamins/minerals as it will bind to them and make them ineffective. Also, one must do the PROPER exercise, i.e., standing on one leg and swinging the other leg, etc. I know hormones (estrogen) help but inasmuch as I am a breast cancer survivor, doctors refuse to give me hormones. I believe this is why we women are all suffering because once you hit 40 estrogen levels fall with each year.

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to mypony,

I've been taking strontium for at least 1-1/2 years. my new avg. score was 2.4 I believe.............overall a 20% increase in density which the clinic said was amazing.

I beleive Prolia IS a bisphosponate, whomever said it is not, i'm going to check that out now tho.


Bye all and good luck!

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Prolia is not a Bisphosphonate it is a human monoclonal antibody and here is a current article posted 5 days ago. Soon I will be getting my second injection.

Source: Clin Ther | Posted 5 days ago
Denosumab for the reduction of bone loss in postmenopausal osteoporosis: a review; Bridgeman MB, Pathak R; Clinical Therapeutics 33 (11), 1547-59 (Nov 2011)

Tags:
o alendronate
o denosumab
o Menopause
o Osteoporosis

Read/Add Comments | Email This | Print This | PubMed | Get Full Text

BACKGROUND Osteoporosis is a prevalent condition that may lead to increased risks for bone fracture and other morbidities and increased health care costs. Treatment modalities for osteoporosis aim to prevent further bone loss and to reduce the risk for fracture. Denosumab is a human monoclonal antibody developed for use in osteoporosis. It inhibits the receptor activator of nuclear factor KB ligand, a cytokine that mediates osteoclast-mediated bone resorption. OBJECTIVEThe intent of this article was to review the clinical pharmacology, pharmacokinetic and pharmacodynamic properties, efficacy, and tolerability of denosumab in the prevention and treatment of postmenopausal osteoporosis. METHODSThe MEDLINE and MEDLINE In-Process&Other Non-Indexed Citations databases were searched for English-language reviews, abstracts, presentations, and clinical trials of denosumab in humans, published from 1995 through July 2011. Search terms included denosumab, osteoporosis, RANK ligand, and bone resorption. Available data were evaluated, and relevant clinical data were selected for inclusion. RESULTSThree Phase II and 4 Phase III studies that evaluated the efficacy of denosumab in postmenopausal women were identified. In a Phase III study, the percentage change from baseline in bone mineral density (BMD) was significantly greater with denosumab compared with placebo (+6.5% vs -0.6%, respectively; P<0.0001). In another Phase III trial, the cumulative prevalence of vertebral fractures was significantly lower with denosumab compared with placebo (2.3% vs 7.2%; 95% CI, 0.26-0.41; P<0.001). Denosumab treatment was associated with significantly greater changes in BMD at the total hip (+4.5% vs +3.4%; P<0.0001) and distal radius (+1.1% vs +0.6%; P = 0.0001) compared with alendronate. Adverse events reported with the use of denosumab have included back pain (34.7%); pain in the extremities (11.7%); general musculoskeletal pain (7.6%); elevated cholesterol (7.2%); inflammation of the bladder (5.9%); and dermatologic conditions including dermatitis, eczema, and rashes (combined prevalence, 10.8%). Serious adverse events have included hypocalcemia (1.7%), pancreatitis (0.2%), and severe infection (0.2%). Several cases of osteonecrosis of the jaw have also been reported. CONCLUSIONSBased on the data from the available literature, denosumab is an efficacious and well-tolerated treatment for postmenopausal osteoporosis.

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Char did you have a dexa scan yet since beginning prolia?

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Hey Chalk
Last dexa was Jan 2011, therefore I do not know if there has been any increase in bone density. I have gained some weight and will be ready for the second after the holidays. Dry peeling skin was the other side effect. UGH

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Thanks for sharing the facts abut Prolia. I guess the dilemma with reading posts is that you need to recognize that anyone - albeit everyone is well-meaning or they wouldn't be on this website - anyone can say anything that others could take as correct. Thanks for the accurate information.

My one-year old DEXA shows my spine at -4.8 and I am only 56 years old. I can't take Forteo due to an elevated Paraphyroid test. The specialist recommended Prolia and told me that it was a new drug, there were no long-term studies, and there were risks. I had my first shot last week. This is why: I took Actonel for over 10 years; quit smoking 15 years ago; have taken calcium and Vit D for at least 15 years; have been walking regularly (for at least 6 years), and even ran for a couple years; took hormones for 5 years when going through Menopause to counteract the bone loss; and I've been steadily losing bone mass through all of these years.

My mother had osteoporosis, and before she died had a Dowager's Spine and chronic - and I MEAN chronic - back pain. My own personal choice is that I don't feel I have a choice. I continue to take supplements, but something is causing my body to leach bone badly -- I hope to figure it out (I JUST learned this -- no one ever gave me my test results, even when I asked for them), but this is an unseen and unfelt condition that can cause tremendous suffering in 20 years. That's my reason for taking Prolia -- I just started, and I certainly may change my mind later if I have horrible side effects.

Good luck, and thank you so much for this opportunity to learn from all of you!

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Well, thank you, LoisToo. Your history is amazing and you have certainly been struggling with this a long time, and you sound like the voice of experience to me. If you are still searching after all the time you have been at it, I guess we shouldn't be frustrated by our own search and decision making. It seems that diffferent people who have chosen strontium have mixed ideas how it should be taken. My directions for strontium citrate were it is to be taken with meals and separated from taking calcium by at least two hours. I have no idea why there is confusion there. Maybe strontium renelate is different? Anyway, I will be following your posts from now on. Thanks again.

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I appreciate comments made, especially by chalk. I agree, none of us wants to take these drugs which are nearly as bad as the disease BUT the catch 22 here, in my mind, is that I tried for 2 years diligently to treat my osteopenia and borderline osteoporosis with exercise, diet and supplements. My T scores still went down significantly. Therefore, what to do? Keep it up and have them slide even more to the point where the drugs THEN would only be trying to maintain already fragile bone? Or take the drugs now, while I'm not too far gone, so that they TRULY may be beneficial? I'm going for the Prolia because I do not trust the concept or known side effects of bisphosphonates. Additionally, the up AND down side of Polia is that, unlike bisphosphonates, it leaves your system totally after six months. BUT, if you have problems with it, it is IN your system for six months. I also appreciate level headed feedback on these issues. YES YES YES horrible things COULD happen. But, then again, I could get hit by a truck tomorrow. The issue is to weigh the pros and cons...how LIKELY is it for a horrible thing to happen? And please correct me if I'm wrong because I would love to be wrong, but, once you have osteoporosis you are sliding downhill...and will continue to slide downhill...we are just negotiating the SPEED of decline. Isn't this the case?

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