Member Interviews: Taape's Experiences With Forteo
Welcome to our Member Interviews, today we'll be talking to Taape about her experiences with Forteo.
Before we start, here's some information on Forteo for those who aren't familiar with this type of osteoporosis treatment.
Teriparatide (Forteo®) is a synthetic form of parathyroid hormone (PTH), which is naturally found in the body. The synthetic hormone is given by subcutaneous daily injection for the treatment of osteoporosis (Regence Group 2009). Forteo is generally reserved for those at high-risk of fracture or with t-scores below -2.5. Forteo comes in a pre-metered dose pen that has 28 days of medication. After the 28th day, the pen is disposed. This medication is FDA approved for two years, however some clinicians are considering additional treatment beyond this if their patients need additional therapy and no other drug is available. Forteo needs to be refrigerated, at all times, at a temperature between 36º and 46º, and should never be frozen.
Welcome Taape, thanks so much for agreeing to answer my questions about your treatment with Forteo.
How long have you had osteoporosis and how did you find out about it?
I was considering spine surgery and after doing some research decided to request that my primary care doctor order a DEXA scan. The scan revealed that I had severe osteoporosis. I've known about my osteoporosis for five years.
Did you have the usual risk factors, or some secondary medical disorder that causes bone loss?
The risk factors I have are family history, decreased estrogen with menopause, and possibly use from multiple epidural steroid injections. No secondary medical disorder was identified.
How did you decide which treatment to take?
My T scores were severe, -3.1 in my spine, and the surgeon started me on Fosamax from reading the DEXA scan report only, rather than sending me to an osteoporosis specialist. After one pill my stomach was burning although I took two more pills for a total of three weeks.
Was it at this point that you decide to take Forteo and how did you do on it? Do you have any side effects from the Forteo? Did you see DEXA score improvements after your two year course on Forteo?
I requested to be seen by an endocrinologist for evaluation since the side effects of the Fosamax forced me to stop the medication. I asked the doctor if I could try Forteo since it was an injectable medication and probably wouldn't bother my stomach. The doctor agreed however at first insurance denied paying for the pens even though I meet most of the FDA criteria, and after both the doctor and I submitting an appeal, it was approved. I didn't notice any side effects besides red marks sometimes where I did the injections. After two years of treatment I got improvement in my bone density confirmed by a DEXA scan. I was not tested for fractures during the first two years on Forteo; it was assumed that I did not have fractures.
Since there is a two year limit on Forteo, what did you take when you were finished?
My doctor recommended quarterly infusions of Ibandonate (Boniva) which was relatively new at the time. I declined because I was afraid of getting three months worth of medication because if there were side effects I'd be stuck with the medication in my system for all that time. So I stayed on daily Calcium and Vitamin D, eating foods with calcium, daily exercise, and did not take any osteoporosis medication. However, I wanted to try a second course of Forteo, the problem was finding a Dr. that would agree to go beyond the recommended two year course. My t-scores dropped dramatically during the period that I wasn't taking any osteoporosis medications after finishing the first two year course of Forteo.
Did you have any trouble finding a doctor to prescribe Forteo beyond two years and was there any problems getting your insurance carrier to cover the cost? Do you have any concerns about the FDA black box warning for Forteo and osteosarcoma?
I did ask several doctors to extend the Forteo treatment longer but all of them refused stating that the FDA guidelines only allow a two year course of treatment because that's how long the clinical trial originally went for. A couple of years after finishing the Forteo I was having increased spine pain and asked my doctor for a spine x-ray & MRI. These tests detected several spinal fractures although the fractures weren't the pain generators in my spine. However, the doctor who ordered the films referred me to a Rheumatologist who decided to order Forteo again for treatment for a second two year period of time. Again both the doctor and I submitted appeals to the insurance company which was finally approved. I do have concerns about the black box warning however since I feel that my options for treatment are limited. I decided to get treatment with Forteo again and hope that there are more options when my two years is finished.
Did you have a DEXA before you started on Forteo again, or does your Doctor order bone marker tests to determine if you are improving?
Yes, I had a DEXA scan before I restarted on my second round of treatment with Forteo which was important documentation to indicate that I required treatment for osteoporosis. The results of the DEXA scan were included with the appeal to the insurance company. I haven't had any bone marker tests done this time yet.
Do you find the treatment and storage of Forteo easy to handle? What do you do if you travel, to maintain the required medication temperature?
I didn't have any problems with the treatment and storage of the Forteo. My insurance uses a specialty mail order pharmacy and sends my pens in an ice chest with ice packs. I save the coolers and the ice packs and pack my pen the same way as the pharmacy does when I travel with the pen. I also bought a thermometer which I use to check the temperature of any refrigerator I put the pen in when staying at hotels.
What supplements and exercises do you do to complete your overall treatment?
I take a daily Calcium and Vitamin D supplement, and walk daily for exercise.
Do you have any personal advice for those considering this type of treatment?
I would recommend that you ask for a DEXA scan as well as x-rays (hip and spine) so the doctor can determine the extent of the osteoporosis. Also, you should ask for a test to see if there is a secondary cause before starting on the Forteo. Take your time deciding on a treatment and get a second opinion if you can before making a final decision so you're not pressured to start on any treatment without thoroughly considering your options.
Have you enrolled in the Forteo-Eli Lily surveillance program for osteosarcoma?
I have not yet enrolled however I believe that this may be worthwhile.
For more information on the Forteo registry see this link.
Thank you Taape for a wonderful and informative interview! We all wish you luck with your treatment and hope your next DEXA shows great improvements.