Bone Density Tests - Requesting Thoughts

[risred1]

Interesting conversation with my specialist today about HIV, Treatment and Bone Density...

When I asked about getting a bone density, his response was... and then what?

His view is that these test for the most part are expensive and yield what type of actionable information?

My initial response was that establishing a baseline. Then it would be possible to see over time if bone loss is occurring, be it the meds, HIV or simply aging.

His response was that because of my activity level, good Vit D awareness, and use of 100% RDA supplement level of Calcium, that there is no indication that he would feel the need to order the test. That the test is expensive. That I'm the only person in his practice, (U of Penn), who so far has requested a test for a baseline purpose.

He promised to talk to other doctors about this, and that Penn has engaged in studies about this.

But what really interested me was the point that, what actionable information would we receive from this test, if any...

I really didn't have an answer, and its true that I don't fit a profile that he presented to me, which involved length of HIV infection and/or treatment, activity level and wieght. I do lift wieghts or move heavy equipment on a fairly regular basis. And do fairly well with the exercise in the warmer months.

So I had the attitude that we should be asking for bone scans. Now, maybe its situational. I did get a vit D test and tested in the low normal range, so I've increase vit D. But the point is that I'm not showing deficiency in that regard. i did add Calcium Citrate as a daily supplement as well to the RDA 100% value. And as to "toughness", I have taken some falls on my bike, one where I went over the handle bars, (riding at night without a good light... never again!), and nothing broke... hit the ground pretty hard too.

So, what do you think? If I'm covered for the bone scan... what justification would I have in requesting it?

Thanks!

[kev72]

If you're questioning whether or not you should get the test as a baseline, I agree with you totally.

Prior to starting my meds, I went to several specialists and it was piece of mind to rule out any issues that could be a potential problem. It also allowed me to establish a baseline for both the progression of HIV as well as long term medication use.

My ID doctor unlike yours seems to agree with me and has given me clearance for everything from Retenalogist (sp) to a brain scan (Maybe because he thinks I'm a ditz, I dunno)

Go for it if you're covered.

[YaKaMein]

Interesting conversation with my specialist today about HIV, Treatment and Bone Density...

When I asked about getting a bone density, his response was... and then what?

A year ago, I was asking the same questions as you http://forums.poz.com/index.php?topic=23815.0

I was confronted with the same illogical response. Really, then what? really?

Well, how about we evaluate the results and engage in decision making about treatment options if warranted .. sorta like a positive HIV antibody test or CD4 counts or VL levels ... see my drift. [granted these labs monitor treatment also!]

What galls me is they will order STI screenings [serum and urine] when I've never had an STI or not had a sexual encounter since 2004 ... or do an annual PPD with no known exposure to TB. Isn't the point of these to SCREEN, evaluate and treat if needed? Or why do any screenings: PSA, HB1ac, Chest X-ray??

His view is that these test for the most part are expensive and yield what type of actionable information?

My initial response was that establishing a baseline. Then it would be possible to see over time if bone loss is occurring, be it the meds, HIV or simply aging.

Response: if you have time, debunk the assertion that a DEXA scan is expensive by pricing these in your area. I did this and learned that it was btw $200 - $300 [far far less than most MRI, CT scans, various scopes, etc]. If there's any bone loss then you'll know your baseline and can discuss the results.

Caveat: Insurance may not pay for this simply because you break a bone or on meds associated with bone loss. I'm covered by Medicare and they generally won't pay unless diagnosed with osteopenia, osteoporosis or Cushing's disease --- but you can't get a diagnosis without the DEXA --- tricky huh?

Fast fwd for me: I discussed this with my doc last Spring. By the Summer, I was determined to get it - just order the damn thing and I would paid for it. The results were severe loss. We also looked at vit-d levels which are insufficient. We're trying to normalized them before my next scan this summer -- then I'll see how to proceed from there.

His response was that because of my activity level, good Vit D awareness, and use of 100% RDA supplement level of Calcium, that there is no indication that he would feel the need to order the test. That the test is expensive. That I'm the only person in his practice, (U of Penn), who so far has requested a test for a baseline purpose.

He promised to talk to other doctors about this, and that Penn has engaged in studies about this.

But what really interested me was the point that, what actionable information would we receive from this test, if any...

I really didn't have an answer, and its true that I don't fit a profile that he presented to me, which involved length of HIV infection and/or treatment, activity level and wieght. I do lift wieghts or move heavy equipment on a fairly regular basis. And do fairly well with the exercise in the warmer months.

I didn't fit the profile either. We're about the same age but I'm less active. I've been on Truvada [which is what prompted me to ask] longer than you and am still vit-d deficient. It's possible you might not benefit from the test .... but you deserved a more reasoned engaged response that what you got.

Reminded of the hogwash I was told and the outcome from being proactive, I wanted to respond to your post. If you gather your information and have some counter arguments, then you both can decide to screen or not.

To me the DEXA was not an overly expensive test and yielded some useful information -- without having a compression fracture of my spine or a broken hip first. The cost was less than all the silly STI or other labs which are done and yield negative results.

Also, the argument that the FRAX fracture index % might be very low based on several factors don't mean squat when you 100% have low bone density.

So I had the attitude that we should be asking for bone scans. Now, maybe its situational. I did get a vit D test and tested in the low normal range, so I've increase vit D. But the point is that I'm not showing deficiency in that regard. i did add Calcium Citrate as a daily supplement as well to the RDA 100% value. And as to "toughness", I have taken some falls on my bike, one where I went over the handle bars, (riding at night without a good light... never again!), and nothing broke... hit the ground pretty hard too.

So, what do you think? If I'm covered for the bone scan... what justification would I have in requesting it?

Continue to be proactive. Your request doesn't seem outlandish. [Not like you're being hypochondrical, thinking you need $$$ of test to see ALL the cancers you clearly MUST have! LOL] Since the costs are not prohibitive or unreasonable, revisit this on a future doc visit.

[robsurmer]

I was asking the same questions five years ago and it took two years for me to get my first DEXA scan. It showed I had Osteopenia in my Spine and Forearm- I was then "watched" for a further two years and was scanned yearly and was put on testogel 50mg/daily as my testosterone was low. Last year I was diagnosed after a scan as having borderline Osteoporosis. I started Alendronic Acid 70mg/once weekly (FOSAMAX) and a daily half tab of ADCAL + VITAMIN D . I recently joined a research group here in the UK for HIV+ individuals with bone density issues to see how and if HIV infection is responsible solely for the problem. I joined because it meant more regular scans and at the initial induction I was scanned and found the treatment had been working very well- my results were much better and now I am borderline Osteopenia in my spine and forearm instead of being borderline Osteoporosis as I was a year ago. I would encourage you to get scanned yearly at least from now to keep an eye on this very common problem with long term HIV+ individuals you don't want to get to the point of a friend of mine who had a both hips replaced before realising he had a problem. Good luck and take of yourself.

[Assurbanipal]

First, DEXA scans are fairly inexpensive as tests go -- why is your doc saying they are expensive? They are usually about a tenth or less the cost of an MRI.  And so cheap that AARP and Walgreens had a bus going around the country doing some version of them for free in 2009.  The bus tour is supposed to start back up again in April 2010 -- schedule here http://www.walgreens.com/topic/health-screenings/tour-schedule.jsp

Second, I didn't fit the profile either.  Until I had a fall and a broken wrist -- then the profile fit a little better, but ...


Oh, looking more closely I see Yakamein linked you to my tale of woes  , so you probably know all that by the time you are reading this post.  But since that thread, there's been more data come out showing that it's not just that HIV+ test worse for osteoporosis, but that it translates into actual increases in bone fractures.  Here's a link to the writeup AIDSMEDS did on one of the studies from CROI this last February. http://www.aidsmeds.com/articles/hiv_bone_fracture_1667_18065.shrtml


Best wishes
A

[Inchlingblue]

The thing about establishing a baseline is that it should ideally be done right before starting meds, especially if starting tenofovir. It's been shown that after starting ARVs there is some loss of bone density during the first few months of treatment and after that it remains stable.

Of course, other factors, apart from ARV meds, can also affect bone density, such as low testosterone.


Beginning antiretroviral therapy is probably associated with a small drop in bone density and then bone density levels out.

LINK:

http://www.hopkins-hivguide.org/q_a/patient/complications_of_hiv_infection/miscellaneous_complications/antiretrovirals_and_decreased_bone_mineral_density.html?contentInstanceId=381280&siteId=7151