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lisazena
10-23-2014, 11:54 AM
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

kennedy
10-23-2014, 12:20 PM
Hi Lisa that interesting

Susie*Bee
10-23-2014, 03:35 PM
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...

lisazena
10-23-2014, 03:53 PM
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

susancook
10-23-2014, 06:19 PM
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

lisazena
10-23-2014, 09:00 PM
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

LindaRacine
10-23-2014, 09:08 PM
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

Chihuahua Mama
10-23-2014, 09:35 PM
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!

lisazena
10-24-2014, 09:30 AM
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

Doreen1
10-26-2014, 10:54 PM
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. :-/