Good/bad experiences with Prolia?

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conniehar
conniehar Member Posts: 954
edited April 2018 in Bone Health and Bone Loss

I will most likely be starting Prolia in the next couple weeks. I am 48 with osteo. I have tried Actonel and can't take it and have had two infusions of Reclast and have not gotten any improvements on my scans. The bone loss is getting worse. I exercise often and focus on weight bearing exercises, take Calcium ,Vit D and magnesium. My current endo sent me to another specialist and no one seems to be able to find a cause for my continued bone loss.

I was terrified to take the Reclast due to horror stories I found on-line but I did it and didn't have any side effects. I am now am terrified to take Prolia. When I go to askapatient.com, there are a ton of posts from people with debilitating pain, etc. I have seen a few positive posts on here about Prolia but am still scared. Given my age, I feel like I can't just ignore it, but nothing I am doing is helping.

Thanks!

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Comments

  • Jujube43
    Jujube43 Member Posts: 178
    edited March 2016

    I'm 72 and just had my 2nd Prolia shot due to osteo. I have not experienced any side effects at all..

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    I am into my third year of Prolia - it has reversed my bone loss and taken me back to normal density with no side effects. I'm a fan

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited March 2016

    You have been tested for hyperparathyroidism, havent you?

    That was the cause of my pre-menopausal osteoporosis.

    For more information, see parathyroid.com


  • conniehar
    conniehar Member Posts: 954
    edited March 2016

    Thanks for the positive results. ICanDoThis - I have been tested for hyperparathyroidism a few times. Thanks for the link, though, it was very informative!

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2016

    Glad someone started this thread. I am about to start Prolia as well. Has anyone had any trouble with blood counts while on this drug ?I am also on Palbociclib and my counts ( #neutrophils and white counts) get pretty low sometimes. I read where this could also be a side effect of Prolia.

  • tuckersmimi
    tuckersmimi Member Posts: 21
    edited March 2016

    I took my first Prolia shot today. I too was terrified to take it.
    So much so that I cancelled the first appointment that was made for me in December 2015.
    Last week when I had my 3 month visit with my oncologist she brought up the subject of rescheduling the appointment.
    Well I decided the time had come to just do it. I wanted the appointment ASAP as I didn`t want to talk myself out of it again. Or at least read myself out of taking it, because I have read some horror stories about the drug.:(
    Well one week later (today) I was there at appointment time to get the injection.
    I must say the stick was hardly felt, even though the nurse was really slow with putting the fluid into the skin. She however told me before hand she would do it slowly so I expected it.
    They had me to wait for 30/45 mins. after the injection to check that I would have no reaction. Thankfully I didn`t.
    I`m glad the first shot is over and just may be I will not be as terrified to take the next one in September.
    The bottom line it was not nearly as bad as I feared.
    Wishing you all well that will be taking it soon.

  • conniehar
    conniehar Member Posts: 954
    edited March 2016

    Thank you for sharing your experience Tuckersmimi - I sure hope you stay side effect free and that it works for you!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited March 2016

    How were those of you on Medicare able to get Prolia? I have the Part D plan with the largest formulary (Humana Enhanced) as well as the most expensive BCBS supplement, and they are both refusing to cover it at all on Part B or D (not even as a Tier 4 or specialty drug), insisting the only injectable or IV osteo drug they’ll cover is Zometa/Reclast. Prolia is supposedly $5K per shot, twice a year; and even Zometa would likely kick me into the donut hole, from which I wouldn’t emerge in time to get out of and into "catastrophic coverage.” Are you all going out-of-pocket; or since it’s excluded from Part D, getting a co-pay card or coupon (which I am told may be illegal for Part D patients)?

  • Jujube43
    Jujube43 Member Posts: 178
    edited March 2016

    I have only Medicare which paid the 80% they cover...my share was $190...


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited March 2016

    Ah, then it’s covered under Part B (not the supplement or Part D)--my MO’s financial office was mistaken (or she probably prefers Zometa and told me Prolia isn’t covered).

  • Ratherbecooking
    Ratherbecooking Member Posts: 42
    edited May 2016

    I am hoping someone can give me advice on the Prolia injection and fibromyalgia. It is being recommended to me while taking Arimidex since my bone density is decreasing, but I am very concerned that it will cause a spike in fibromyalgia symptoms.

    Does anyone here have muscular/skeletal pain issues and has used Prolia successfully or with SE?

    Thank you in advance.

    • Shelly52
      Shelly52 Member Posts: 153
      edited May 2016

      I had a prolia shot today at my MO's suggestion. She told me that b cancer likes to move to the bones and that a recent study showed that prolia reduced the risk by 20%. She likened it to adding a protection to your bones to help keep cancer out. I also have osteopenia and she was very clear that this was a good option for me. I have great trust in her so went ahead with it.

      So far no side effects but I'll report back if they show up.

      Best to all.

    • SpecialK
      SpecialK Member Posts: 16,486
      edited May 2016

      rather - I had pre-existing lumbar disk issues, and now have thoracic bone spurs, trochanteric bursitis and torn gluteus medius muscles from an injury - I have been on Prolia for about 3 years, and have found that it has no effect on any of those things. I have experienced a significant amount of joint pain from Femara and Arimidex, but also no worsening on Prolia.

    • cive
      cive Member Posts: 709
      edited May 2016

      Aurora - Have you had a CT scan with contrast, or are you just talking DEXA scan?

      ChiSandy - My medicare advantage plan (Healthnet) has both Prolia/Xgeva and Reclast/Zometa covered under part B, because you have to go to the drs office to get them although they show up on the formulary. I don't yet know the cost because it hasn't cleared my insurance company as of yet and I didn't have to pay the co-pay. Yes, the Center for Medicare Services has changed the rules on charitable organizations providing assistance for copays which hurts those of us requiring expensive medicines for chronic conditions. Wouldn't hurt if you wanted to complain to your House Representative and ask that s/he support HR3742.

      I get Xgeva injections which are just Prolia on steroids (120mg vs 60mg 6 times/year vs 2 times a year) for bone mets. No problem with the injection which takes a few mins because they are injecting it into fat rather than muscle or vein and I've not noticed any side effects as of yet.

    • conniehar
      conniehar Member Posts: 954
      edited May 2016

      Hi cive -

      I have only had dexa scans. I haven't heard of anyone having a CT scan for osteo.

      Saw my endo this week - latest testing couldn't find any reason for my situation. She said I have high bone turnover and this is caused by some enzyme. Other than meds, the only other plan of attack is the usual calcium, Vit D, exercise. She sent me down the hall for a Prolia shot right away but the nurse wouldn't give it to me until she runs it through my insurance. So, I am waiting to hear about that.

      Good thoughts to everyone going through this!

    • cive
      cive Member Posts: 709
      edited May 2016

      I would suggest that perhaps you discuss getting at least a contrast CT with your MO or PCP because you want to know that the osteopenia/osteoporosis is just that and not something else if it doesn't seem to be resolving itself by doing all the right things. And I wouldn't worry about the Prolia, my Xgeva is generally a piece of cake.

    • KayaRose
      KayaRose Member Posts: 183
      edited May 2016

      thanks to all for replying to this post. I'm scheduled for my first Prolia shot in June. I am having some dental work done and was advised to hold off on Prolia until the work was completed. I am on Medicare and my MO had to get prior approval to ensure it would be covered. Did not seem difficult to obtain the approval. Can't say I'm looking forward to it but waspleased when I heard it may help prevent a spread to the bones.

    • Rufhewn
      Rufhewn Member Posts: 45
      edited May 2016

      Hi, I've had two Prolia shots and due for a third, No side effects whatsoever and having been diagnosed with osteopenia as well as taking Arimidex, I am thankful this drug is available to reduce further bone loss.

    • GeorgieGirlKC
      GeorgieGirlKC Member Posts: 132
      edited June 2016

      So glad to see this post and thread started. I was in osteoporosis when I started chemo then radiation. When I had my post treatment DEXA I had osteoporosis in spine and hips. I started a once a week pill to help with the problem but did not tolerate the side effects. I took my first Prolia shot this spring and have not noticed a change in my physical status. Plus exciting about the research about Prolia having a side benefit of helping to prevent mets to the bones. Best of luck to everyone in their journey with this.

    • JoniB
      JoniB Member Posts: 346
      edited June 2016

      I had osteopenia prior to starting AI and my MO recommended Prolia. I plan on agreeing to this. How many shots do people usually get? Is it every 6 months for life or is there a finite time limit? Thank you!

    • Shelly52
      Shelly52 Member Posts: 153
      edited June 2016

      Hi JoniB, I was told 4 prolia shots, 6 months apart. Others


    • cajunqueen15
      cajunqueen15 Member Posts: 794
      edited June 2016

      I had my first injection today. I have early osteopenia and personally feel that it will help prevent bone mets (my MO said there is no consensus on that yet, some research says yes, some says no). I am having a mercury filling replaced 3 months in which I'm a little nervous about but I'm going to be taking this for a long time and need a lot of work over the years and figured I'd just roll the dice (no extractions planned at all).

      I'm getting shots every 6 months for the indefinite future. Most likely because I'm so young and am taking Arimidex and already have osteopenia.

    • ChiSandy
      ChiSandy Member Posts: 12,133
      edited June 2016

      There is no danger from mercury fillings--they do not give you cancer or mercury poisoning. However, they are soft (can fracture and require re-restorations), and plug-ugly. Tooth-colored acrylics have come a very, very long way in terms of function, durability, and looks.

    • cajunqueen15
      cajunqueen15 Member Posts: 794
      edited June 2016

      I'm kind of a special case. Its my back molar and grind my teeth excessively, so I likely am releasing some mercury. But the more pressing issue is my tooth has darkened and if there is a problem other than staining, it can't be seen by xray due to the mercury.

    • conniehar
      conniehar Member Posts: 954
      edited June 2016

      Thank you for all of the responses to my post. I started this thread in March but just received my first injection today. I hoping I will be side effect free! I hope everyone that has received the shot recently is doing well.


    • cajunqueen15
      cajunqueen15 Member Posts: 794
      edited June 2016

      I should not have googled ONJ.

    • Shelly52
      Shelly52 Member Posts: 153
      edited June 2016

      I don't know what ONJ is but I'll be sure not to google it.

    • SpecialK
      SpecialK Member Posts: 16,486
      edited June 2016

      ONJ is osteonecrosis of the jaw, a potential side effect of Prolia (denosumab), but is rare in the 60mg dosage given. It is more common in the higher dosage, more frequently administered, Xgeva which is given for existing bone mets, or bone cancer.

    • ChiSandy
      ChiSandy Member Posts: 12,133
      edited June 2016

      ONJ is also a rare side effect of Zometa/Reclast infusions as well. My dentist told me that whichever option I choose, to have all invasive dental work (extractions, root canal, implants, deep root planing) completed 6 wks-2 mos. before each shot or infusion (and to wait an equal length of time after the bone drugs for any additional invasive dental work).

    • smo23915
      smo23915 Member Posts: 165
      edited June 2016

      Special K do you know how long one could stay on the Prolia injections? How many injections have you had?

      Sharon

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