• What to do for osteoporosis?

    Asked by MarcieB on Wednesday, October 16, 2019

    What to do for osteoporosis?

    It seems I have osteoporosis in my thigh bones, no where else, but apparently arimadex (which I take to inhibit estrogen) can cause bones to thin so my doctor prescribed Boniva to be taken once a month. I took my first one Monday morning per instructions (lots of water, upright for an hour) and I felt fine. But, I awoke Tuesday morning to severe achy pain in my legs and my feet felt like duck paddles - I could barely walk. During the day I developed more pain in my shoulders, shooting pain in my jaw, and killer heartburn. By night I could swear I was in the middle of chemo again, only worse. I couldn't move my fingers when I went to bed. It is better today, but what WAS that?? I cannot believe anything that takes you down like that can be a good thing? Anyone have experience with this?

    19 Answers from the Community

    19 answers
    • cllinda's Avatar
      cllinda

      I have the same thing with my bones. My doctor started me on Prolia and I really didn't notice any side effects. Read up on both drugs and maybe he can switch you. And Prolia is a shot every six months.

      about 1 month ago
    • Bengal's Avatar
      Bengal

      Don't get me started on pharmaceuticals! I've had two adverse reactions to two different things in the past two weeks. My oncologist wanted to start me on Prolia because of decreased bone density. I refused it. The potential side effects are nothing I would want to risk. I have not researched Boniva but it sounds like this is something you need to get of off immediately. I take vitamin D, calcium, try to incorporate amp!e dairy into my diet and exercise. Big pharma is in this to make money so they convince doctors to convince us we need this stuff. Yes! Some drugs are life saving and thank god for them but some end up causing more problems than they fix. IMO.

      about 1 month ago
    • GregP_WN's Avatar
      GregP_WN

      My problem is the possibility of osteoradionecrosis, a big word for my jawbone rotting away after a tooth is pulled. I drink about a gallon of milk a week or more. Hopefully, that's my weapon against it. I did have all teeth pulled 7 years ago without any issues, and now I will have a rogue wisdom tooth out next Friday, I'm looking for good things to happen then too.

      about 1 month ago
    • andreacha's Avatar
      andreacha

      MarcieB - That reaction you had was truly scary. I'm not as brave as you. I'd have called 911 in a heartbeat. I have Osteoporosis in several areas, including my spine. I've fractured it on 2 different occasions. Neither were falls. Just the way I turned or bent over. Radiologists - "Interventional Radiologists" perform what is called a Kyphoplasty (sp?) each time. With a rather large needle, they take out the broken pieces, clean it out and cement your spine back together. It is supposed to be an out-patient procedure with lying flat for three hours after. My first went well. My 2nd not so well. The repair itself was fine but I had a reaction to something and developed an infection. I was released 10 days later. I would do it again, however, if necessary.

      My Oncologist said nothing about Boniva but did recommend Prolia. He informed me that I would need a clean bill of health from a dentist before I started it. I had a lot of work done but held off starting the med. Can't say why maybe fear of reactions. I have made another appointment for next week with the dentist to check everything again before I take the plunge and start it. My biggest fear was the jaw necrosis that Greg mentioned. If we read every medical info sheet we've been given we wouldn't take the drug. We are each so different.

      Unfortunately, eating a certain diet and taking certain vitamins, etc. are not for me. Aside from being on Warfarin for my heart and having to restrict foods eaten, I have also been diagnosed by my Oncologist with Hemochromatosis which is an overload of iron on your liver, hereditary and offers even less to eat. At this point, I am hoping again for an all-clear from the dentist for the Prolia. Except for my bedrooms my entire house has 14"x14" tiles which can be very dangerous for falls. I wish you the very best if your doctor changes you to Prolia.

      about 1 month ago
    • 2943's Avatar
      2943

      I have been on Prolia for 3 1/2 years. I take Claritin for three days after and all is good. My bone density improved even when I was on aromatase inhibitors. I have learned to ask infusion nurses for any words of wisdom on all this. Has been very beneficial a number of times. Hugs!

      about 1 month ago
    • MLT's Avatar
      MLT

      I get Xgeva shots to build bone bc of cancer in my bones. It is a form of Prolia. It has helped my ostepenia. Sometimes I get achy from it, but not bad. Hope you can find something that works for you.

      about 1 month ago
    • Helayne411's Avatar
      Helayne411

      I’ve been on Anastrozole for the past year. I work with a dr who practices functional medicine. She prescribed two supplements: AlgaeCal Plus and Strontium Boost. I’ve been able to maintain bone health since I started this regimen a year ago.

      about 1 month ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I sure do find these answers informative. I was diagnosed with ostepenia back in 2016 and also in early stage pariadontal disease. so you can see the quandery I would be in should I get osteoporosis. Not on anything for it, just drinking a gallon of milk a week ... maybe a little more as well as taking calcium, Calcium plus D3, and D3 daily. HUGS and God bless.

      about 1 month ago
    • criley's Avatar
      criley

      I had a bad reaction to prolia and boniva. I have a reclasp infusion once a year. Takes about 15 minutes. I sometimes feel a little under the weather the next day but that’s it. My bone density is improving. I hope I spelled the drugs correctly but I guess they’re close enough.

      about 1 month ago
    • GregP_WN's Avatar
      GregP_WN

      Thanks for sharing your experiences with everyone, that is what makes our community valuable-sharing our personal, first-hand experiences.

      about 1 month ago
    • MarcieB's Avatar
      MarcieB

      I am very grateful for the insight and information. I have a Dr. appointment Nov. 5 and now I have some other options I can discuss with her. Thank you!

      about 1 month ago
    • lynn1950's Avatar
      lynn1950

      Sorry you had such a rough time with Boniva. I have taken Prolia twice a year for the past 3 years. It has reversed my osteoporosis to osteopenia in all but one hip. I don't notice any SE. I have been off of Arimidex for almost a year after ten years on. I delayed my Prolia injection once to get a tooth implant with no problems. I take calcium and d3 supplements daily.

      about 1 month ago
    • po18guy's Avatar
      po18guy

      As a male in his 60s, I have osteoporosis. Oddly, it was the best thing that I could have had when I crashed my motorcycle. The bones (5 ribs into 12 pieces, collar bone, glenoid) broke, leaving the joints alone. No surgery. That shoulder now seems to have a greater range of motion than before, but that is just my weird journey. Having said that, I recently stopped Alendronate sodium as I had received the maximum benefit, which is only a small percentage of bone mass increase. DW notes that I seem to have just as much bone in my head as before, but I digress.

      We are now pondering the next move, such as Reclast, Forteo or Prolia. To avoid a certain drug because of "possible" or "potential" side effects strikes me as a bit short-sighted. If I added up the side effects of the 20 anti-cancer drugs I have received, they would fill a book, and I would be dead if I did not try them. This is discounting the probably 30+ additional drugs to prevent or counteract the side effects of the primary drugs.

      I may search for a clinical trial, as advancements are made by offering ourselves up for the sake of the next generation.

      about 1 month ago
    • lujos' Avatar
      lujos

      Po18guy, I agree about side effects, everyone is different, so it’s all a lottery anyway. Besides, research seems to indicate that the worst of the side effects of Prolia are when it is used at higher strength for metastatic cases, not at the lower dose for osteoporosis.

      about 1 month ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I had preexisting osteopenia (DEXAScan was 2 mos. before starting letrozole, another AI). Can't take oral bisphosphonates (Fosamax, Boniva) due to acid reflux disease. Supplements & exercise alone weren't an option, due to going on an AI. So I was given a Zometa (aka Reclast--that's with a "t," not a "p"--please read bottle labels or handouts from your doctors to get the spelling right) infusion, which was a disaster: 5 tries to find a suitable vein, pump was extremely painful, spiked a 103F fever and then awful aches for nearly a week.

      Was switched to Prolia, and just had my (hopefully) last shot after 3 yrs--with no side effects whatsoever, not even redness at the injection site. My 2-yr followup DEXAScan (after the Zometa and 3 Prolias) showed improvement despite taking an AI--one of my scores (spine) went from "osteopenia" to "normal!" Have my 4-yr followup next month; since I have only (hopefully) one more year on letrozole, some quality gym time plus the magnesium, K2 & D3 will suffice. Not sure about strontium--will ask MO or primary care doc. Had to drop calcium pills when blood levels became too elevated. I do consume dietary calcium (dairy, fortified plant milks, green leafy veggies, oysters).

      As to osteonecrosis of the jaw (ONJ), I had a full dental workup and regular scaling/cleaning before even the Zometa I.V. I get cleanings every 3-4 months. Must be vigilant to avoid losing any teeth--had a couple of root canals for an abscess, rather than extractions. Wanted to keep my incisors from loosening and to get a straighter smile, so instead of implants (all the teeth involved are fully functional anyway) I got Invisalign Express orthodontia, which actually stabilized my teeth once they were moved into place. Due to wanting to keep my teeth (and first the Invisaligns and now the retainer), I am a fanatic about brushing & flossing at least 2x/day.

      ONJ is real, as are spontaneous "paradoxical" fractures of the thighbone--but they're still pretty rare and actually less common with Prolia than with bisphosphonates (oral or I.V.). With Xgeva, which is a higher-dose denosumab than Prolia and given more often, for Stage IV bone mets, the incidence of ONJ is greater--but let's not jump off that bridge till we come to it,

      I had one friend with osteoporosis (not a cancer patient) irreparably break a hip--she went downhill and died of sepsis shortly after her 70th birthday. Two more of my friends with osteoporosis (they're sisters: one is a 6-yr b.c. survivor who took anastrozole (Arimidex) and Fosamax for 5 yrs, the other is not a cancer patient and not on bone drugs), recently had falls that resulted in fractures requiring surgical repair: the b.c. survivor fell suddenly while standing and broke her pelvis and hip; her sister slipped down stairs and broke her ankle.

      OTOH, when I fell last year and hairline-fractured my L scaphoid and both ends of my R radius (and needed my congenitally-too-long L ulna shortened because it was chewing up my wrist cartilage), the radius healed spontaneously and the surgery for the scaphoid and the ulna went so well that the bones fully healed several months ahead of expecations. Scars not even visible. Might even get the hardware removed. Had I not treated my osteopenia, the fractures might have been worse and the surgery not gone as well.

      Osteoporosis is a bee-yotch--treat it!!!

      about 1 month ago
    • Bengal's Avatar
      Bengal

      po18guy, I agree with you about balancing the "possible" harmful side effects of pharmaceuticals against the potential benefits but only to a point. Yes, we are willing to accept some pretty dramatic side effects from life saving drugs. But many drugs for non life threatening issues can leave us with unacceptable side effects. When I am told there is a 1% -2% chance of a drastic side effect, somebody has to be that 1-2%. That's happened to me twice in the past couple of weeks. I was the one accounting for that low %. To me, the possibility of jaw necrosis or spontaneous thigh bones fracture is too big a risk to be acceptable.

      about 1 month ago
    • HardyGirl's Avatar
      HardyGirl

      I have not been diagnosed with osteo but I have suspected it for some time. I have brought it up to my oncologist but they seem to think it's not important right now. they want to concentrate on the cancer first then look at that. It seems like we could do both.

      about 1 month ago
    • 2943's Avatar
      2943

      Ask to have a Dexa scan. Painless..no contrast. They can and do treat both. Aromatase inhibitors can do negative things to your bones. You and your doctors need accurate info to make good choices for you. Tell your doc you are able to do two things at once. And really even more! Hugs!!!
      Ps. Remember, that doc is on your team but YOU ARE THE CAPTAIN. I said that to a very ‘important doctor’, caught him off guard, and we had great communication after that.

      about 1 month ago
    • po18guy's Avatar
      po18guy

      I have been given a 0.5% chance of being alive after these 11 years. Had I worried about potential this or that, I'd simply be gone. I did not listen! (One of my best qualities).

      about 1 month ago

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