Loss of BMD in hips after taking Forteo or teriparatide?

Posted by lynn59 @lynn59, Mar 29 9:14pm

I’m scheduled to start a biosimilar to Forteo in a couple of weeks and I just read a post today from a woman who lost bone density in her hips after being on Forteo. I got interrupted and couldn’t find the post again, so I’m asking the question here as now I’m afraid to start. My T-score in my spine is -3.1 and my hips are -2.8. I’m borderline whether I need an anabolic and the only reason I’m doing it is because I downhill ski, as well as cross-country and backcountry skiing. I can’t afford to lose in my hips. My endocrinologist warned I may lose in my forearm, but she didn’t say anything about losing in my hips. Now I’m wondering if I should not start it and just go on a Actonel, Reclast or Prolia …. Or do nothing! This is all scaring me silly.

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gently | @gently | Apr 3 12:15am

lynn59, one of my favorite endocrinologists at Stanford speaks very highly of your dr. Khan.

lynn59 | @lynn59 | Apr 3 6:39am

In reply to @gently "lynn59, one of my favorite endocrinologists at Stanford speaks very highly of your dr. Khan." + (show)

She is incredibly smart and has made a great name for herself, but she doesn’t respond well to questions from patients. I flew from our ski chalet in the western part of Canada to Ontario (4,200 km) for my appointment with her. She kept me waiting for 4 hours then told me our appointment would be by FaceTime! Then when she finally got on the phone, she said I had ten minutes as she had to speak at conference! In her defence, when I told her that was unacceptable as I just flew from British Columbia to see her, she called me on my drive home from her office (not close) and said okay ask whatever you want for how as long as it takes. She wanted me on Prolia, followed by her own method for getting me off of it. When I told her I had no intention of giving up skiing, she said I needed an anabolic. After she did a bone scan (I was taken out by a dog and we were worried about my spine as my back was very sore … but no fractures!), my follow up experience allowed very limited time. I have yet to see her face to face, as I was back in BC. I wish I could see her 3-6 months after starting the bio-similar she is putting me on (I get my first shot with training in April 11), I sent her an email asking about monitoring bio markers, etc, so I’ll see what she comes with back with.

windyshores | @windyshores | Apr 3 7:12am

I would at this point speculate that 1/2 endos do bone markers and 1/2 don't, and that researchers may sometimes be in the latter group. The whole issue of bone markers is controversial and no doubt covered quite often in these conferences.

lynn59 | @lynn59 | Apr 3 7:24am

In reply to @windyshores "I would at this point speculate that 1/2 endos do bone markers and 1/2 don't, and..." + (show)

Yes, my endo is very research based, and doesn’t seem to believe in wasting time on something that doesn’t have a lot of proven data to support its use. I, on the other hand, want to look at all the tools available to help learn as much as I can. Keeping in mind that it isn’t perfect. My career was providing research to television/radio stations on viewership/listeners, so I understand her concerns about making decisions on unstable data, but still, this is my body, and I only get one!

windyshores | @windyshores | Apr 3 7:29am

In reply to @lynn59 "Yes, my endo is very research based, and doesn’t seem to believe in wasting time on..." + (show)

@lynn59 totally agree. I got myself a second doctor as well as my wonderful first doctor. The second one does bone markers. A flawed tool no doubt, but we don't have many tools. It's like flying a plane in the dark with no instrument panel sometimes!

gently | @gently | Apr 3 10:06am

In reply to @lynn59 "She is incredibly smart and has made a great name for herself, but she doesn’t respond..." + (show)

I'd looked her up on RATEMD and found her patient ratings low for this very reason. The scattered high ratings were the ones where she spent time with the patient. Her position may require that she see a certain number of patients a year.
I'm wary of doctors who prescribe Prolia. She may be disinterested because you didn't take her advice about the nasty-drug.
She may not want the extra involvement with BTMs.
I'm curious if you were able to get an MRI of the painful area of the spine.
Her publications reference cost effectiveness.
My other favorite endocrinologist thinks that institutional physicians involve themselve with public policy in a restrictive result for the patient. The greatest good for the greatest number. The US has an additionl source of the same problem with PPOs.
You got care by protesting the unacceptable . Forteo and a biosimilar and I hope an MRI.
A two year follow-up sounds like insantiy.

lynn59 | @lynn59 | Apr 3 10:17am

I asked her for Forteo and told her I would pay out of pocket. I just wanted the best drug for me. If people are prepared to renovate a kitchen, why not pay to renovate your skeleton? She prescribed Osnuvo a bio-similar. I just want to get started, so I don’t think I’m going to fight that. Thoughts?

lynn59 | @lynn59 | Apr 3 11:05am

In reply to @lynn59 "I asked her for Forteo and told her I would pay out of pocket. I just..." + (show)

No I didn’t get an MRI. The bone scan showed no compression fractures. Is an MRI better? And if so, I’m not sure it’s necessary as my back is much better now.

sallyj2 | @sallyj2 | Apr 4 5:39pm

In reply to @lynn59 "No I didn’t get an MRI. The bone scan showed no compression fractures. Is an MRI..." + (show)

If you have fractures, mri can tell the age of the fracture, necessary for most doctors to perform kyphoplasty. MRI’s also show disc involvement better.