13 Dec 2017
I knew I was in trouble at my follow-up bone density scan when the technician at one of my area’s largest healthcare networks told me that she did the scan slightly differently than some of her colleagues, the implication being “better.”
But for anyone who has read up on Dexa scans or spoken to their physicians, you already know that the technology is not the most sophisticated as compared to the arsenal of high-tech scanning devices used in other medical fields. And, certainly, the methodology to administer the scan must be consistent from year to year. So it was with dismay that I lay there and contemplating her comment and wondering how effective the year to year comparative results would be.
I digress a bit, as I promised to follow up on my prior post: Jumping My Way to Bone Health. So back to that…
About 18 months ago, I had my first visit at New York’s Hospital for Special Surgey (HSS). The visit with the doctor there was enlightening.
Having already been diagnosed with osteoporosis and having had little success with handling it via lifestyle changes (in fact, my spine score worsened significantly), I was eager to hear what she had to say and, truthfully, now open to other courses of action.
First, she assured me that I had done nothing wrong. I had led an active, healthy life thus far. But, I was actually predisposed to osteoporosis. That’s because I didn’t start getting my periods until I was almost 17 years old (another story there). And bone density growth occurs from the time of your first period until we’re 30, at which point there’s a hard stop on bone density increase. So girls who get their periods at the average age of 12 have a total of 18 years to grow bone density – I only had about 13. But we didn’t know that back then. For that matter, how many parents know this about their daughters today?
Next, she told me that there are so many new medicines coming to market today and women, even in the short run, will have many more options than our mothers did. She also noted we are, in general, much more active than our mothers were, which is also a help over the long run.
Addressing the fears about using medication, the doctor shared that most of the bad hype related to women who had been on drugs for too long – protocols have changed. HSS has a huge sample of female patients and this doctor had never had a patient who had suffered from spontaneous breaks. Calming to hear.
Additionally, there are now bone building drugs that, unlike the bisphosphonates that prevent bone loss, offer the potential of significantly improving/building your bone density. She was most concerned about my spine – as was I – and, after reviewing much data, she recommended that I do go ahead with the bone building drug Forteo.
Reading up on Forteo was a bit scary. The maximum allowable time on this daily injection (yep, you or a very good friend/partner/family member will have to inject) is two years due to the risks. Thankfully, my HSS doctor had not had any patient with rare side effects. Also, her protocol was different from the norm.
She places her suitable patients on Forteo first for one year and then administers one year of Prolia (one shot every six months) to “fill in” the bone that’s been formed by the Forteo. The group at HSS has found that to be more effective than the more commonly used protocol of two years of Forteo back to back. Then, for me, after the Prolia, it may be back to Forteo for one more year – we’re not there yet.
After all those years of trying to move the needle on this through exercise and nutrition, and actually worsening, I decided to go for it.
So what was the next hurdle?
First, Forteo is extremely expensive and may not be an option if your insurance provider denies coverage. My HSS doctor fought for coverage for me and my test scores were dismal enough to have qualified. I have already completed my first year of Forteo. I then did two bone scans: one at the local provider and the second at HSS (again, I had the luxury of great insurance, which covered both). The aim was to compare the two scans within weeks of each other so I could transition over to just the HSS scans moving forward. The HSS scan was more sophisticated, as they invested in software which is apparently more accurate and yields additional information (the actual equipment looked exactly the same to me). Interestingly, my readings on the HSS equipment were about 10% better than the other provider. Plus, the first year of forteo showed “statistically significant” improvement. I was thrilled. I am now in my year of Prolia. (Anecdotally, I have heard about women who did not make significant progress on the forteo.)
(Special note about pricing: Regarding the cost of these drugs, the numbers are staggering. When Forteo first came to market, it was priced at about $700 a month. And that was considered a top price of its kind as they were the only bone building drug at the time. With its impressive results, the already hefty price has climbed to about $3,100 a month, placing it out of the ballpark for many patients, unless insurance will cover it. The generic form should be coming to market but, as we’re seeing all too often, many drug companies are now paying the manufacturers of the generic versions to keep their generics off the market. Hopefully, with Forteo at least, new bone building drugs will make pricing more competitive. And for me personally, I already know I will have to battle again to get back on for my second year. The irony is that as the drug helped improve my scores, it will be that much harder to get approval from the insurance provider, as my scores are not as bad.)
While I’ve spent a lot of my life using alternate therapies, I decided to go ahead with Forteo out of a deep concern for my future quality of life. It was not an easy decision. So far it’s worked out for me. That may not be the case for everyone.
Please feel free to ask questions as I’ve certainly included a lot of info here and am happy to elaborate on any specifics.