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  • Osteoperosis Post Fusion

    Hi all,
    I am two years out and doing well after a fusion from T9 to the sacrum. I just found out that my osteopenia has progressed to osteoperosis. The rheumatologist wants me to take Prolia injections (2x a year). Sounds okay, but the physiatrist I see says Forteo is the only drug to build bone so he thinks I need Forteo daily injections that I would give myself.

    My Osteo is at the very beginning of the scale, -2.5 so the rheumatologist thinks this is too much, and my GP says Forteo has some risk of Osteosarcoma.

    Because of my fusion I feel that treating the Osteo correctly is particularly important.

    Does anyone have experience with Prolia or Forteo post fusion? Any thoughts? Thanks.
    Lisa
    60 degree thorocolumbar curve beginning at T12
    58 years old

  • #2
    Hi Lisa that interesting
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

    Comment


    • #3
      I just googled forteo and fusion and came up with some talk on other boards. You might want to include your scoliosis surgeon's input. Maybe someone else has better advice...
      71 and plugging along... but having some problems
      2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
      5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
      Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

      Corrected to 15°
      CMT (type 2) DX in 2014, progressing
      10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

      Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

      Comment


      • #4
        Forteo Post Surgery

        Thanks Susie Bee and Kara. I Googled Forteo and what I find is more about before surgery and also about taking it if fusion didn't occur, which isn't my problem. So I'm still interested in the experience of those on the Forum. I know that Scoliosis is often accompanied by Osteo.
        Lisa
        60 degree thorocolumbar curve beginning at T12
        58 years old

        Comment


        • #5
          I have not looked these drugs for osteoporosis up in the literature for a while, but what might be important is if the drug builds BACK bone, or if it focuses on other bone in the body.

          Make sure that you have adequate amounts of Calcium and Vit D.

          Susan
          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
          2018: Removal L4,5 screw
          2021: Removal T1 screw & rod

          Comment


          • #6
            Drugs

            Thanks Susan. To my understanding Forteo is the only drug that builds bone. I know that that it targets a specific spot, but the goal is to have a strong spine. Prolia stops the breakdown of bone.
            Best,
            Lisa
            60 degree thorocolumbar curve beginning at T12
            58 years old

            Comment


            • #7
              Hi...

              I haven't actually read the literature, but we're 3 years into a study using Forteo for patients undergoing lumbar spine fusion. I believe the osteosarcoma was seen in rats and mice who got very high doses. With that said, there's obviously still a small risk of osteosarcoma.

              --Linda
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

              Comment


              • #8
                Originally posted by lisazena View Post
                Hi all,
                I am two years out and doing well after a fusion from T9 to the sacrum. I just found out that my osteopenia has progressed to osteoperosis. The rheumatologist wants me to take Prolia injections (2x a year). Sounds okay, but the physiatrist I see says Forteo is the only drug to build bone so he thinks I need Forteo daily injections that I would give myself.

                My Osteo is at the very beginning of the scale, -2.5 so the rheumatologist thinks this is too much, and my GP says Forteo has some risk of Osteosarcoma.

                Because of my fusion I feel that treating the Osteo correctly is particularly important.

                Does anyone have experience with Prolia or Forteo post fusion? Any thoughts? Thanks.
                Lisa
                Hi Lisa,

                As part of my testing for my revision surgery I had a Dexa Scan and was told I had mild osteoporosis and was prescribed fosimax.

                My daughter called shortly after and I shared the info with her and she nearly went berserk over the phone! She works with doctors all day long in her business and told me NOT to take the fosimax and further nearly freaked out about the Forteo suggestion (she said it's worse).

                She didn't have time to go into all the details of why this particular doctor told her all the terrible negatives of both drugs, but she described how he has had to wean his mother off both drugs, and how sick it made her in the long term..... I guess it was bad. As soon as I have more details, I'll post back.

                In the meantime, do a ton of research on the internet on both drugs and in particular, the long term issues. I apologize for telling you such negatives about both drugs without any back up info, but I'll find out and let you know.

                For me, I've learned to be a medical detective whenever I have a drug prescribed or procedure. My daughter told me that especially for Forneo, there are DEFINITELY kickbacks to the doctors prescribing them. She compared Dexa Scans with with those kiosks in a mall, and a subsequent prescription, and the only winner is the doctor.

                Research and compare all pro's and con's. For me, I'm on prescription vitamin D (50,000 units in one tablet once a week) and I've tripled up on Calcium for my mild osteoporosis.

                I'll let you know more as soon as I do, ok? But I think LindaRacine was on to something with her information.......

                Best regards!
                Last edited by Chihuahua Mama; 10-23-2014, 09:39 PM. Reason: typo
                Susan
                XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


                Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

                Comment


                • #9
                  Osteo Drugs

                  Hi ,
                  I actually took Boniva before my fusion for 5 years, but haven't taken it for about another five. They don't like to give these drugs longterm. I still feel it is important to treat the Osteo, but am trying to figure out how to best do it. With Fosamax people are scared of jaw necrosis, but my doctor said that usually only happens when the drug is given in high doses for cancer treatment. FYI I had no problems with Boniva, which is like Fosamax.

                  And pre surgery I know Doreen, someone who has been on the forum took Forteo. She told me it made her nauseous, but it built her bones.

                  Thanks for all the thoughts.
                  Lisa
                  60 degree thorocolumbar curve beginning at T12
                  58 years old

                  Comment


                  • #10
                    I started Forteo 3 months before my surgery and the doc and Dr. Lenke both advised Forteo doesn't last. Once the injections stop, the new bone growth diminishes overtime. Dr. Lenke had me off all meds for a couple of months. When I restarted Forteo injections, I got very nauseous which I did not experience preop. Nausea is very common. After talking with Dr. Lenke, he confirmed that since my bone density outside of my lumber was solid, the scoliosis was most likely skewing the bone density results to read worse than they actually were. So I stopped Forteo all together. Over the years, Lenke has been pleased with the fusion he has seen in my xrays. Lenke explained that Forteo is the only drug that builds bone fast but it doesn't last. :-/
                    44 years old at time of surgery, Atlanta GA

                    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                    Post-Surgery curves ~10 degrees, regained 4 inches of height

                    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                    http://thebionicachronicles.blogspot.com/

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