anything new on forteo

[dahliasinbloom]

I've had three leg fractures and my doc has suggested forteo. I searched the site but haven't found much in the way of testimonial.

Has anyone out there been taking it for a while and seen results?

Did insurance cover it?

I'm also wondering if it could affect the ectopic bone growth in my hip. When I was injured 25 years ago, I had some bone growth (that can still be felt throught the skin). But it stabilized soon after the injury and there has been no new growth.

Any info would be greatly appreciated.

Thanks!

[carl]

My wife (ab) has been taking it for significant osteoporosis for over six months and our insurance (private, small group) does cover it. It's quite expensive (without a good prescription plan), taken daily using a small syringe, and needs to be refrigerated at the pharmacy and home. Given all of that, her doctor told her that it seems to be working for her (she did try other medications).
I hope this helps,
Carl

[dahliasinbloom]

thank you Carl.

I got an email from another person with sci who has been on it two years and has seen significant improvement.

My concerns are: growth of ectopic bone
and calcification of muscle

I've never had a problem with calcification of muscle (that I know of), but I know someone who has. He had to have it surgically removed.

Has anyone heard anything about these type of complications from taking forteo? I'm sure the possible complications are different for sci than everyone else. nothing's easy.

Thanks

[SCI-Nurse]

Here is an article concerning osteoporosis and spinal cord injury, forteo is discussed as an option.

http://www.emedicine.com/pmr/topic96.htm

JM

[stephen212]

Originally Posted by dahliasinbloom

I got an email from another person with sci who has been on it two years and has seen significant improvement.

How many years post-injury was this person? Do you know how progressed his/her osteoporosis was before beginning treatment?

[Millard]

I sent a couple of emails to dahliasbloom relating to the Forteo injections I have been taking for the last two years. Dexascan reveals density is now normal except for a small area of my right hip.

I broke my left tibia/fibula in 2002, my right foot twice in 2003 and my left patella in 2004. A dexascan showed significant bone density loss.

I am a C5-C6 quad, 58 years old and am 38 years post injury.

My OS wants me to start with FosaMax to maintain or possibly improve density and, of course, take supplemental calcium with vitamin D.

I hope this answers your questions.

PS: The only side effect I noticed was general weakness for a while after injections. I remedied this by taking my injections before bedtime.

[stephen212]

Hi Millard,

Your results are very encouraging. Congratulations!

I have a few more questions: Is your injury complete or incomplete? Does your OS want you to take off Forteo and start Fosamax or do both together? My understanding is that Fosamax will not restore bone in SCIs, only help slow down bone mineral loss.

Thanks.

[Millard]

Originally Posted by stephen212

Hi Millard,

Your results are very encouraging. Congratulations!

I have a few more questions: Is your injury complete or incomplete? Does your OS want you to take off Forteo and start Fosamax or do both together? My understanding is that Fosamax will not restore bone in SCIs, only help slow done bone mineral loss.

Hi Stephen,

I am a C5-C6 incomplete. Currently, the time limit for injecting Forteo is two years, which I will complete.

I was taking Fosamax but my OS had me discontinue it during the Forteo treatments.

Good luck,

[dahliasinbloom]

It's encouraging to know someone with sci has seen significant results.

I've had three leg fractures. I'm going to monitor the ectopic bone and go ahead with the forteo. Last hurdle, my insurance.

[Karen M]

I have been using Forteo (daily injections) for 14 months. Previously, I had taken Fosamax for 2 years. Results showed further bone loss after the Fosamax program. I now have 2 marble size bladder stones which will be removed in January (ASAP), by what means I am undecided but that will be another post. My urologist said that he intended to research any correlation between bladder stones and Forteo. I hope that the formation of stones will translate to increased bone density, although it is quite uncomfortable (hurts like hell sometimes.)
I am 54, C4 inc. central cord, 13 years post with very high level of spasticity (not spasms.) I make 2 trips around the house in a Lift-Walker and take steps to make all transfers, but couldn't do that until my 4th year. I had hoped that given the inc. and high spasticity, I would be lucky, plus no family history, but my osteoporosis is (was? : ] ) severe. My RX insurance has a $2500 cap - not good enough with Forteo running from $590 to $729 a month but better than nothing. Yes, shop pharmacies, and, good luck!