Considering Prolia, concerned about its Immune System Effects

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Brendatrue
Brendatrue Member Posts: 1,830

I reportedly have osteopenia, which does not appear to have progressed over the past couple of years. I tried Fosamax (and another with a name I've forgotten) a few years ago, and I could not tolerate the side effects. When I had my very first Zometa infusion, I had HORRIFIC side effects, ultimately had to take short-term steroids to manage my reaction, and missed about 10 days of my life. My onc decided I was allergic to it. Anyway, fast forward to his recommendation regarding Prolia, at my last visit. He knows I am highly sensitive to multiple meds and allergic to quite a number as well. He asked me to consider taking Prolia. I have read some research and opinions about Prolia, and I am concerned about its potential negative impact on the immune system. I developed Chronic Fatigue and Immune Dysfunction Syndrome following my last chemo and a severe case of the flu, and I am now disabled as a result.

Would you please share if you have been recommended to take Prolia and how you made your decision to take or not take it? And if you have taken Prolia, what your experiences have been? And, of course, please share any other thoughts, concerns, etc., you might have about this medication. Thanks!

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  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    Brendatrue, I had my first Prolia shot last Friday. I have been on Fosamax fo 4+years. I have osteopenia. My MO suggested that I take the Prolia shot because he felt it would offer better protection than the Fosamax. I take Aromasin which will cause bone loss if not counteracted.

    I only started the Aromasin six weeks ago so I don't know if the aches I am having are from the Prolia or the Aromasin. It is not disabling just uncomfortable. I am concerned about the meds we must take to prevent recurrence, manage SE's etc. If it becomes too unmanageable I will stop taking them but I want to have the best chance of preventing recurrence and so will atempt to take them and try to manage SE's with exercise, healthy eating and heating pads. Good luck

  • katymom
    katymom Member Posts: 141
    edited February 2012

    My onc has recommended prolia for me as well.  I have been on femara for 4 1/2 years and have osteopenia and getting closer to osteoporosis.  He said he's been using prolia on patients for about 2 years and doesn't see many side effects.  I just printed out a study about it and am going to try to read about side effects.  I am worried too.  He said I could be on it and if my bones improve get off of it for a while. I worry it will be a long term thing just like everything else.  I know another doctor here is recommending chrondrotin for the side effects of femara--so I'll probably try that and maybe there won't be as much discomfort.  Keep posting on what you decide to do....I'm trying to make up my mind.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012
    ptdreamers & katymom: Thanks for responding. I tend to be one of those people who wants to avoid taking meds and more meds for the side effects of those meds (although I realize appropriate medical care can provide us with some tough decisions to make), but I also am concerned about bone health. I do take calcium supplements but tend to focus more on getting calcium from the food I eat; I also take glucosamine chondroitin, and it has been very helpful for my knees (osteoarthritis). I manage to exercise at least five days a week, typically most days. I will try to do some more research before I see my onc and I may just decide to wait a few more months before making a final decision. I am really concerned about my low functioning immune system!
  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    Anybody else thinking about Prolia or with experiences in taking? Please share!

  • tenaj
    tenaj Member Posts: 1,052
    edited February 2012

    Just came back from my visit with onco & told him of the terrible SE from my infusion of Zometa in Oct., he suggested Prolia every 6 months now as this has less SE & that "he is taking all of his patients off zometa" He is putting it through my insurance & I guess I have some research to do.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    I am supposed to go tomorrow for my first Prolia injection.  I had stable osteopenia for many years, but it has worsened in the 18 months since diagnosis (last bone density scan, same day as fateful mammo/US).  I had a bone density at the end of January and it showed worsening and I have only been on Femara for about 6 months, so...  I too am concerned about immune system issues - I weathered chemo with no problems as far as opportunistic infections, like colds/flu - so I don't want to break that spell!  I guess we will see!

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    I had my first Prolia shot on February 3rd. Minimal aches that could have been the weather(raining alot here). I will have every six months. Seems to have less effects than what I have heard about Zometa, etc. Keep up with your supplements and avoid crowds and sick children whenever possible. Good luck.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    pt - thanks!  I didn't have much of a problem with aching from Neulasta, or even Taxotere, so I am hoping that bodes well for this too.  I had been having a lot of aching recently, due to Femara and Herceptin, but now that I am five weeks out from my last Herceptin it seems to have dissipated.  I really don't have much exposure to children, as mine are in their 20's, and I am not really in crowds too much, so hopefully no problems there!  All my routine bloodwork was really strong in January - completely normal.  Good luck to you as well! 

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    Just got back from the doctor, who is also recommending Prolia instead of the Fosavance I've been on for the past couple of years.  Last dexascan in August showed worsening osteopenia and osteoporosis in the lower spine (I've been on Femara since August 2008).  Have to do some reading on Prolia first, though!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    lindasa - one of the SE's that sounds alarming is the jaw necrosis risk.  My understanding is that it is less of a worry if you are not experiencing extensive dental work, previous or ongoing extractions, or other current dental issues.  My onc likes the treating aspects too - rebuilding and preventing, as opposed to just preventing.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    Special -- I discussed the jaw necrosis problem (which has been more the result of the bisphosphonate injections).  Apparently, the incidence is much rarer with Prolia, a monoclonal antibody.  However, the immune system "can" be affected negatively with Prolia.  I'm not allergic to anything that I know of, and I've been remarkably (touch wood!) free of any bacterial infections over the past several years.

    Must do a bit more reading on this before making the decision -- although I am leaning towards the Prolia! 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    Got my Prolia injection this morning - totally painless, given by my favorite chemo nurse, who is awesome!  Interestingly, I did have to sign a piece of paperwork about insurance reimbursement and financial responsibility.  One injection is $2200.00 - yikes!  They did register me with the manufacturer.  If my insurance declined payment for some reason, the manufacturer replaces the med for the MO office, so little to no financial burden for me.  My insurance usually reimburses if a referral/consult is in place prior, and we can prove a worsening bone situation with my latest scan.  I did do the FRAX calculation - without factoring in chemo/cancer/Femara, based on my stats of height/weight and bone density scan results I have 24% chance of fracture in the next 10 years, so...  It did help me decide to go ahead.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    tenaj: If you find information that is particularly interesting as you research let us know. I hope you will be able to tolerate it if you decide to try it.

    SpecialK, I'm sorry to hear about your bone loss, and I bet you're relieved that your aching has dissipated. I hope your Prolia infusion went well today; please let us know how you tolerate it--the good, the bad, and the ugly, if you don't mind--although I hope it will only be good!

    ptdreamers, It sounds like you had a pretty good response. I'm like you with regard to being around crowds and children. I go to shops when they first open, on weekdays, if at all possible, and I am merciless when quizzing family members about their health and their children's health. If I don't ask, they often will expose me to their contagious yuck.

    lindasa, I hope you also will let us know what you decide and what your experiences are if you decide to try it.

    Overall I tend to worry more about the possibility of bad effects for the immune system, and I would like to have more details about that. The jaw necrosis issue is a concern. I remember when Zometa was first on the scene, various doctors minimized the risk of necrosis and I heard from a number of people regarding ghastly experiences. Of course, I know some who had absolutely NO problems with Zometa. I actually suffered a broken tooth the day after I had my one and only Zometa infusion. I knew much more about my risks than my dentist. Fortunately, it worked out for the best.

    I also wanted to mention that my onc today said I have enough other issues to deal with right now, so he doesn't really want me to consider Prolia at this time. However, he wants me to continue to do some research and determine whether I would like to try it by the time of my next visit. I'll be interested to see what other input turns up here.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    I will definitely keep you posted on any SE's.  I am hoping that because I had minimal aching with both Neulasta and Taxotere whatever I feel is short-lived.  I do get cold sores when I am sick or stressed and did discuss taking a daily Lysine, they said Ican if I wish. I also had a CBC and all my bloodwork is excellent.  I had no overt problems with immune suppression while on chemo, so I am hopeful that will continue.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    SpecialK, My WBC's plummeted the very first time I did Taxotere, and I was prepared for a terrible experience with Neulasta, but I did just fine. My onc was amazed given my history of sensitivities with meds. I'm glad to hear your bloodwork is excellent, and I hope your response to Prolia will be very positive!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    brenda - thanks!  Me too!  Your WBC experience is not unusual, but it is good that Neulasta did its job for you.  I feel bad for the folks that receive Neulasta and get no WBC boost.  They did say today that it will most like take several injections (6 months apart) to see progress of rebuilding bone.  Also that I should schedule any dental work, other than a routine cleaning, at the half-way point between injections. 

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    SpecialK, I hope you are not experiencing any problems thus far; I'll assume no news is good news!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    A little aching - what else is new, right?  Also a rather sharp stomach ache last night, gone today, so I can't definitely attribute it.  I pretty much just feel normally achy from Femara.  So, yay!

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    Great news! I hope this works well for you.

  • MondaysChild
    MondaysChild Member Posts: 591
    edited February 2012

    I received a Prolia injection on January 23 and had no problems then or since.  I could never tell it happened.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited February 2012

    I think I'm missing information here, why is Prolia being recommended in an osteopenia situation?  Did you go on an AI, so this would be preventative?  I had an extensive workup including thyroid, parathyroid, and kidney tests with an endocrinologist after chemo.  I have osteoporosis in the spine, and osteopenia in the hip and wrist.  He recommended Fosamax, and felt like Prolia was overkill (also, insurance wouldn't pay for it unless my FRAX score was a certain percentage).  I am on Tamoxifen currently, but believe my chemopause contributed to this situation, as well as long-term vitamin D deficiency and low calcium.

    He initially thought Prolia might be on the table. My concern with Prolia is it is so new.  I'm not thrilled taking Fosamax--after a lot of research, I'm not convinced these drugs produce truly supportive bone material (it is the struts that actually create strength, not just a lot of density, and these drugs apparently do not create the struts of original, healthy bone). 

    That said, your doctor can best steer you, I'm just glad mine seems to be reasonable and not driven by the most expensive, newest treatments.

    I also am modifying my calcium and D intake, cutting my caffeine, and doing weight bearing exercise.  My boss had borderline osteoporosis, and with careful calcium consumption and a pretty radical diet overhaul, she improved incredibly over a couple of years.  It doesn't all have to be the drugs.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    For me, my existing osteopenia worsened after cancer, chemo and 6 months of Femara.  I cannot tolerate oral meds (Actonel, Fosamax, Boniva, etc.) because of a previous surgery on my gastro-esophogeal junction.  I tried these drugs when I was first diagnosed with osteopenia, they are a no-go.  I have increased my calcium and Vit D, but still showed loss.  My MO likes Prolia because it is treating and preventing, and his patients have not had a plethora of issues with the Prolia so far.  I did the Frax calculation - without factoring in cancer and its treatment - my fracture probability in 10 years was 24%.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    Interesting discussion....First, I'd like to add that my most recent bone density scan showed a slight improvement in my lumbar spine and worsening in my hip. If I remember correctly my FRAX score showed an approx 6% risk of fracture in the next 10 years. I also have read about a possible link between bone density loss in post menopausal women and risk of breast cancer recurring to bones. I believe that the latter is an area of insufficient research--someone PLEASE correct me or add knowledge that you may have. Since bone is a primary site for recurrence of breast cancer, I have one more reason for being concerned about bone health.

    Ltothe K, I agree that many approaches may contribute to improvement in bone health. You mentioned your boss's improvement, and I wonder whether she has experienced early menopause, breast cancer treatment (chemo, hormonal therapy), or an illness that places her at risk for osteopenia. Trust me, I am just curious. I have dealt with osteopenia for about 15 years, and I have focused on many approaches, including calcium and Vitamin D supplementation, sunlight exposure, weight bearing exercise (yoga, classical stretch, walking, and low weight workouts). I have minimal caffeine intake (dark chocolate--in very small amounts); I do not smoke and I drink about 3-4 glasses of wine a month. Perhaps I would have experienced a greater progression without these approaches, but I also have seen my osteopenia advance over the years (albeit with a slight improvement as noted above). My onc suggested Prolia, and I am still considering it.

    Tampa, thanks for your input. SpecialK, thanks for the additional info as well. Please let us know whether your insurance approves or denies. Anyone else have something to contribute?

  • LtotheK
    LtotheK Member Posts: 2,095
    edited February 2012

    Hi Brenda, regarding my boss' health, it's a serious hot mess!  She doesn't have cancer, but just about everything else.  Including a lot of fractures, and so they discovered her osteopenia/porosis early in the game.  She uses this supplement, I may start taking it when I finish what I've got now:  http://www.lifeforce.net/index.php?mode=products&section=12&key=9

    She also drinks whole, unpasturized milk from a Wisconsin farmer.  I have mixed feelings about dairy. 

    In my case, the reason I agreed to Fosamax despite my general thoughts on the bios was to try and avoid advanced loss.  This is a very serious disease, in fact my grandmother died of it.  My family history made mine a fait accompli, and I'm sure chemopause will move things right along at a pace that will mean crazier stuff in my future.

    I do believe my long-term D deficiency didn't help at all.  Caffeine, well, frankly, I ain't giving it up entirely.  I am a big believer you've got to have a life, too.  A few glasses of wine, candy when I want it--as my onc says, it's good for the soul. 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited February 2012

    Oh, one other thing:  for about $80, you can get a rebounder.  It is supposed to be fabulous for bone building, and I hop around on it when I watch my evening boob tube.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    LtotheK, Thanks for mentioning the supplement; I'll check it out. I have to admit, I have a visual image of me on a rebounder, and it's not pretty. I have knees from hell--probably shouldn't say that--need to have a great deal of respect for my body since it has kept me going--and I would be terrified about the thought of messing up my knees further. I do have a therapy ball, and I sit on that and bounce around!

  • LtotheK
    LtotheK Member Posts: 2,095
    edited February 2012

    Brenda, you made me chuckle, thank you!  I have had surgery on my knees. The Urban Rebounder is a good one, you don't have to go nutty, just a nice, gentle bounce when I'm wasting time anyway...not everyone can do it, but well worth a shot!

    I did find out that swimming, biking and walking do just about bubkus for bone building.  Sigh and moan. Yoga seems to be better than originally thought.

    Ah, the full time job our bodies become.

    And in other news, would love to hear what this group thinks of Strontium. 

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    I'd never heard of Strontium until I read your post. I did a quick Google and found the worldhealth.net article. It sounds interesting, and I would like to know more. Anybody else have comments?

    And, yes, trying to be as well as is possible for me is a FULL time job, too.

  • MondaysChild
    MondaysChild Member Posts: 591
    edited February 2012

    My insurance, UnitedHealthcare, did indeed cover my Prolia.  And for abour 50% more than originally estimated by my MO's office. They expected and agreed to my insurance paying $800+ but my insurance company instead approved almost $1300.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2012

    Very interesting. I wonder what Medicare pays and if private insurance follows their lead. Anybody else have any experience with Prolia or know anything about Strontium?

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