Bone Health - Male Osteoporosis and Running, 29 Years Old

Get your meds under control.

Adjust your diet.

Boo-hoo you don't like dairy.

Find another thread to post on if you think this is a waste of time or if you think being diagnosed as osteoporotic before age 30 is somehow funny or as simple to remedy as "adjust your diet."

I also never said "I don't like dairy" - I said milk doesn't agree with my stomach.

31 and concerned wrote:

If you don't mind me asking, what is your sex, approx age and insurance company? I know there are different rules for men vs. women seeking this treatment for Aetna...

Female, mid-30s, United Healthcare. They denied it at first, but I had my endocrinologist write multiple letters and appeals for me and it was finally approved.

Stumbled upon this thread at a time when I'm sort of at my wit's end over bone issues. My story-35 year old female, who's been dealing with a femoral stress reaction for a year now. Diagnosed last August (wasn't even running much), two months on crutches, three off of running, have now gone through a few stints of trying to run for 2-3 weeks, then having to stop for another 4-7...the works. MRI showed incomplete healing in December, so I went through an endocrinology workup then, thought things were maybe getting better, but an MRI a couple of weeks ago showed no bony progress since December. Needless to say, I'm frustrated.

Anyways, a DEXA in December showed my Z-scores were -1.8 at the lumbar spine, -1.2 in the hips, and they didn't bother to convert them to T-scores, citing my age. So, not terrible, but not great, either. My vitamin D at the time of diagnosis was the highest it's ever been (I tend to run low)-45-but dropped to 30 over the winter, and my urinary calcium excretion was a tad high. The endocrinologist told me to up supplementation of both, which I've done-I take 5000 IU of vitamin D/day, as directed, but that didn't help me heal at all. I'm also not at all underweight and cycling normally, so those factors are off the table as contributors to my lack of healing here.

So, I'm pretty interested in hearing about those who have used forteo. My bloodwork also revealed that my parathyroid hormone was barely normal-21, with the normal range being 19-88. The endocrinologist basically told me that I just don't make bone well, and to expect stress fractures, which wasn't really the treatment plan I was going for here. I've been researching, and have found the strongest evidence for Forteo/parathyroid hormone injections with regard to stress fracture healing, and was strongly considering contacting my more open-minded PCP to see if we might be able to consider that route. Interestingly, my family history is strong for osteoporosis on my mother's side, and when my grandmother was in her late 80's, she also sustained a stress fracture in her femur, and was treated with forteo. So, I'll check back in here to follow some of these stories, and update if I'm able to make any progress. Just glad to hear some of what others have tried, and to feel like it might be worth trying to advocate for myself a little more!

Posting to keep the conversation going with an update -

My hip scores improved 2% and 8% for T-score since September 2018 with vitamin D / calcium treatment, so that is good. However all my spine T-scores were -3.0 or worse with continued mild deterioration, with the worst score being -3.7. The doctor sort of gave me the option to start with the Fosomax now, or we could try for the forteo pre-auth and see what we get back. She did indicate that the options are we accept with the Fosomax that the numbers will likely just stay the same as they are now, best case. I didn't really love hearing that - think I'm too young to just "accept" this - and asked if we could at least see what Aetna says to the forteo request. If that gets approved, then I need to see what will be covered with it cost wise, as there is no way I could afford paying anything near full sticker price. Will report back in 2.5 weeks as it seems others have been interested in hearing how this plays out.

bump

I was just informed that Aetna denied the prior auth request for Forteo. Now considering if I should appeal or just accept it and begin on fosamax...

31 and concerned wrote:

I was just informed that Aetna denied the prior auth request for Forteo. Now considering if I should appeal or just accept it and begin on fosamax...

Really sorry to hear that. Honestly, I wouldn't worry about the spine scores as much - unless you are doing a bunch of upper body lifting, those are generally pretty low in runners. If hip is improving, that's fantastic!

I assume your doc knows you are a runner, so I'm scratching my head with why they would recommend Fosamax. After my two years on Forteo, my endocrinologist said they usually put people on Fosamax or another biphosphonate as a "booster," but she would NEVER recommend that for a runner due to it making bones brittle.

Thanks. She basically said the brittleness thing is a myth and that the best the fosamax will do is probably maintain the bone density level where it's at now. And if that happens, we try for the Forteo again eventually, per Aetna's specifications of what qualifies you for Forteo (unsuccessful treatment for 1+ year on something else). Aetna denied the request "because you haven't had low-force fractures (ie fall in your bathroom and break a hip)." I guess unsurprising but pretty upsetting and unsettling that that is the standard, when the spine scores are "severely osteoporotic."

Sigh. I may try to appeal just for the hell of it. If anyone has any thoughts, I'm all ears!

Thanks.

Update for anyone that's interested - got the forteo approval post-appeal and starting first dose tomorrow!

Bone density and bone strength are distinct considerations. The science is simply more complicated than your Z score.

https://juniperpublishers.com/oroaj/pdf/OROAJ.MS.ID.555830.pdf

That said, there are many things you can do to preserve and strengthen your bones.

I've listed several of these on other threads; primarily, sufficient D and Mg are often overlooked.

Some people have lower than average bone density for genetic reasons. You should switch from running to rational resistance training.

Hi there! Your story sounds similar to mine and I was just curious as to where you are now? I had a pelvic stress fx that wouldn't heal, and after a DEXA was noted to have just over the line osteoporosis. I met with an endocrinologist who did a ton of bloodwork, nothing wrong......figured it was genetic (my mom and sister both have low bone density). I had no issues prior to this fracture, but have dealt with 2 more since that one (and 2 labral repairs). I thought about Forteo but my physician said the drug can't replace what was never there?

Hi! Curious how long it took you to heal - I am experiencing something similar with a femoral stress fracture and would love any tips.

Hi- I am experiencing something similar with a femoral neck stress reaction and would love to know how long it took before you ended up healing and if you found anything that especially helped.