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Thread: Osteoperosis Post Fusion

  1. #1
    Join Date
    Mar 2011
    Location
    Philadelphia
    Posts
    79

    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. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    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

  3. #3
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    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...
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  4. #4
    Join Date
    Mar 2011
    Location
    Philadelphia
    Posts
    79

    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

  5. #5
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,591
    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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  6. #6
    Join Date
    Mar 2011
    Location
    Philadelphia
    Posts
    79

    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

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,125
    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

  8. #8
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157
    Quote 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 at 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.

  9. #9
    Join Date
    Mar 2011
    Location
    Philadelphia
    Posts
    79

    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

  10. #10
    Join Date
    Jul 2011
    Posts
    535
    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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