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Author Topic: HIV MEDS and Osteoporosis  (Read 14355 times)

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Offline stephenhoward

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HIV MEDS and Osteoporosis
« on: December 31, 2009, 10:09:47 am »
I am a 62 year old man who has been on Kaletra and Truvada for about 4 years.  (A very good drug regimen by the way compared to others I have tried.)  Have had some disc issues in back for about 13 years with some minor arthritis.  Now I just had a bone density test, for the first time, and it came back indicating osteoporosis.  A couple of questions:
1.  Can HIV meds including those I've taken have as a side effect osteoporosis?
2.  Can a standard treatment such as Fosamax for osteoporosis be taken without complications with HIV or the meds?  (No drug interaction indicated on this site Check Your Meds that I could see.)
3.  Has anyone else had osteoporosis and HIV+ that has found an effective treatment for the osteoporosis that doesn't interfere with the HIV treatment?

I appreciate anyone's experienced or educated input.  Thank you.

Offline buffaloboy

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Re: HIV MEDS and Osteoporosis
« Reply #1 on: December 31, 2009, 02:44:44 pm »
It seems that osteoperosis can be both a symptom of HIV and a side effect of the medication:

http://aidsblog.blogspot.com/2005/07/hivosteoporosis-link-uncovered.html

Offline Inchlingblue

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Re: HIV MEDS and Osteoporosis
« Reply #2 on: December 31, 2009, 11:38:27 pm »
Bone density problems can arise from taking tenofovir (Viread), which is part of Truavada. It's probably a good idea to take calcium/vitamin D supplements in order to possibly avoid this. Once it's happened I'm not sure what the protocol is for treatment. Fosomax could help, and possibly a switch away from tenofovir.

Viread may cause bone problems. In one clinical trial conducted by the manufacturer involving HIV-positive patients who were new to HIV therapy, Viread [combined with Sustiva and Epivir] caused decreases bone in mineral density (osteopenia) at the hip and spine. Researchers are currently looking into the seriousness of this possible side effect. If you have a history of bone fracture or are at risk for osteopenia, your doctor may want to consider ordering bone scans on a regular basis while you are taking Viread. While it's not clear if calcium and vitamin D supplementation can help with this side effect, it might be beneficial if you are taking Viread.

LINK:

http://www.aidsmeds.com/archive/Viread_1587.shtml

Maybe you can ask one of the experts on thebody.com what they would do:

http://www.thebody.com/Forums/AIDS/Meds/index.html

« Last Edit: January 01, 2010, 03:45:15 pm by Inchlingblue »

Offline Ann

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Re: HIV MEDS and Osteoporosis
« Reply #3 on: January 01, 2010, 11:24:40 am »
Stephen,

Please don't take offence, but at 62 years of age, osteoporosis could be caused by age. It's not just older women who get osteo. It could be that the meds are accelerating the problem, but things that go on with our bodies aren't always a result of the virus or meds. Sometimes they're just part of being alive and growing old. I just wanted to make sure you've thought of this possible aspect.

An
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Offline Assurbanipal

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Re: HIV MEDS and Osteoporosis
« Reply #4 on: January 01, 2010, 02:37:53 pm »
Hi Stephen

I have osteoporosis and am being treated for it.  There's a number of us on here.  Here's links to a few of the prior threads:

http://forums.poz.com/index.php?topic=29163.0  (reporting a "cure" after medication !)

http://forums.poz.com/index.php?topic=23815.0

http://forums.poz.com/index.php?topic=24714.0


There is a lot of good general information at the national osteoporosis foundation site (www.nof.org) .  If you have not yet been there it's highly recommended.

I'm almost a decade younger than you.  Don't know if it was the HIV or the meds for sure in my own case, but suspect the viread in Truvada was not helpful. 

As far as interactions with meds are concerned, I'd suggest the med checker on this site (under the treatment tab up above). 

My own personal experience with Fosamax was not particularly good, but that is apparently pretty rare. I'm now on Actonel (risedronate) and preliminary indications are good; the doctor says we will do another DEXA scan to find out for sure whether it has worked in about another 6-12 months. 

One last piece of advice -- most of the osteoporosis meds are very inconvenient to take and thus are formulated so you only take them weekly or monthly.  But if you happen to have a bad reaction that means it lingers in your system for a long time.  Based on my Fosamax experience I encourage people to try to start with a daily dose to make sure they can tolerate it -- if it works out you can move to the weekly or monthly dose readily, but if it doesn't work out you get it out of your system faster.

Course, that might be a lot to go through given that side effects are pretty rare.

Good luck
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Inchlingblue

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Re: HIV MEDS and Osteoporosis
« Reply #5 on: January 01, 2010, 05:15:19 pm »
Another thing to look at is your testosterone levels. Low T levels have been linked to loss of bone density.

Testosterone increases bone density in older men

LINK:

http://findarticles.com/p/articles/mi_m0ISW/is_257/ai_n7638026/

Low Testosterone Increases Bone-Fracture Risk

LINK:

http://www.poz.com/articles/bone_testosterone_aids_761_13849.shtml

Offline veritas

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Re: HIV MEDS and Osteoporosis
« Reply #6 on: January 02, 2010, 05:40:19 am »

stevenhoward,

Others have mentioned vitamin d and calcium above. Vitamin d is the hormone that helps calcium do it's job. It might be a good idea to have your vitamin D level checked. If it's very low, your doctor might want to give you high doses to bring your level to the normal range.

Exersize also helps to strengthen bones.

Here are some links:

http://www.nof.org/prevention/vitaminD.htm
http://www.mayoclinic.com/health/osteoporosis/HQ00643

Good luck,

v

Offline stephenhoward

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Re: HIV MEDS and Osteoporosis
« Reply #7 on: January 02, 2010, 01:18:45 pm »
Thank you to everyone who has responded, particularly with those who mentioned the issue of Viread, which I have been taking for a number of years including must recently as a component of Truvada.  I have already increased my Calcium from 800 to 1400--( I get 800 a day from Kaiser Pax Vitamins--a great natural help for those of HIV+ but expensive) and Vitamin D from 400 to 600.  I have an appointment with a rheumotologist set up for next month to get more information about the results of my scan and possible treatments.  I'll see if you can do the Fosamax on a daily basis to check it out--that makes more sense than monthly.  I had heard about Forteo injections, but since I travel a lot for business and refrigeration is necessary, that may not be a good alternative.

Since reading your suggestions I have found more out about osteoporosis and HIV and meds, and it seems that is most likely the cause--especially since I work out regularly and have not had this condition--at least according to x-ray before I was diagnosed positive.  (My orthopedic doctor noticed differences in bone density from x-rays taken 10 years apart and suggested the bone density test)  Of course, aging probably didn't help, but based on whatever has said, the meds and HIV probably more likely.

Anyway, thank you all.  Once again this forum proves to be invaluable!

Offline YaKaMein

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Re: HIV MEDS and Osteoporosis
« Reply #8 on: January 02, 2010, 08:09:21 pm »
Hey Stephen,
In agreement with previous posts ... really no way to definitively know if the cause of OP is age, HIV, HAART, deficiencies of testosterone or vitamin D .... of any combo of them. Am in my 40's, moderate exerciser and have been on HAART [Atripla, which has Truvada, viz. tenofovir ... as a possible culprit] only three yrs. So, I've discovered my osteoporosis earlier than most.

My T-score was -3.1. Assurpanipal has some great insight and helped me formulate my plan of action. We looked at deficiencies first and I've been on vitamin-d treatment to bring my value to normal. Will repeat DEXA scan this spring and go from there about treating with specific drugs if there's been minimal reversal of bone density.

Working with your doctors, you can determine the best plan for you: pills, injectibles or supplementation.

Good luck and keep us posted. Glad to help if I can. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
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05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Sean Strub

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Re: HIV MEDS and Osteoporosis
« Reply #9 on: January 06, 2010, 11:05:59 am »
I was diagnosed 18 months ago, via a bone density scan, with "profound osteoporosis", after taking Viread for five or six years.  I was suspicious of the diagnosis, as I had no baseline measure, have always had fine and easily-breakable bones and recognize Pharma's effort to pathologize every variation in human physiology. 

Rather than going on meds spent a year taking Vitamin D, calcium, exercising and trying to get more sunshine (sunshine is important to bone building).  I did the test again a year later and I was in even worse shape and was advised to start Reclast (a daily injection) as well as some occasional infusion.  I didn't like the side effect profile and comments I saw posted about Reclast, so I asked about alternatives.  The endocrinologist said Human Growth Hormone would help rebuild bone, if I could get my insurance company to pay for it.  I was successful at that, so I am injecting HGH every other day.  I can feel it working, although I have not yet had a subsequent bone density test (it takes at least six months before a difference is likely to be noted, I was told).

Since my initial diagnosis, I have advised seven or eight personal friends, all around my age (51), who have taken Viread or Truvada for several years to get bone density tests.  Of those that did (five) all except one were diagnosed with osteopenia or osteoporosis.  Another friend, who has had HIV for 20+ years and never been on treatment, had a bone density test and it was normal.

HIV may contribute to bone density, in conjunction with age.  But the main culprits here are almost certainly the demineralizing effect of certain anti-retroviral treatments.  There is more evidence incriminating Viread than other drugs, but I think it likely that a number of other drugs have a similar effect.  Viread might be worse because of its longer half-life.

However, and this is a consideration for many people on Viread or Truvada, it also might be a good idea to discuss Viread dosing with your physician to see if it is necessary to take it daily.  Many people have gone to every-other-day Viread while maintaining an undetectable viral load.  For the 18 months prior to my osteoporosis diagnosis, I was taking Viread every other day and stayed undetectable. 

When Larry Kramer had his liver transplant, sophisticated tests were undertaken to check his metabolism and the bio-availability of all treatments that were being put into his body (to minimize the processing through his delicate new liver).  At that time, they reduced his Viread dosing to once a week.  That's right: 1/7th of what most people take.  I checked with him a few months ago and he said he still takes it only once every five days and stays undetectable.

Some (perhaps many?) people are taking more Viread than is necessary to maintain an undetectable viral load.  Reducing the amount of Viread, while carefully monitoring viral load, may be a strategy to reduce the demineralizing side effects.  Unfortunately, "combo" drugs, like Truvada, make it much more difficult to control the dosing of the individual components.


Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #10 on: January 06, 2010, 11:36:00 am »
Here's my question, as I've been on Viread or Truvada now for (I think) seven years: when the first reports of bone density issues came about 2-3 years ago my doctor had me start taking daily vitamin D/calcium supplements.  Once I began reading here about many getting bone density scans with unsatisfactory readings I brought the issue up again with my doctor and he ran a blood test for these levels and they came back OK.  He had stated he'd only send me for a scan if that test came back out of normal range.  Is it safe to say that this is correct and I don't need the scan, and if so how often should I have the vit D lab test done now?
"I’ve slept with enough men to know that I’m not gay"

Offline Assurbanipal

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Re: HIV MEDS and Osteoporosis
« Reply #11 on: January 06, 2010, 05:22:41 pm »
Here's my question, as I've been on Viread or Truvada now for (I think) seven years: when the first reports of bone density issues came about 2-3 years ago my doctor had me start taking daily vitamin D/calcium supplements.  Once I began reading here about many getting bone density scans with unsatisfactory readings I brought the issue up again with my doctor and he ran a blood test for these levels and they came back OK.  He had stated he'd only send me for a scan if that test came back out of normal range.  Is it safe to say that this is correct and I don't need the scan, and if so how often should I have the vit D lab test done now?

John posted a NATAP paper a while ago that suggested annual vitamin D screening  each fall.  http://natap.org/2009/HIV/042209_03.htm  (Also includes info on how vitamin D regulates calcium levels)

But it is not clear (to me anyway) that simply testing for vitamin D is sufficient.  And I have learned through this process that testing blood levels of calcium is almost useless -- the body will pull calcium from your bones if it needs to in order to maintain blood levels -- so a normal blood level calcium doesn't mean that your bones are getting enough.

Given how easy the DEXA scan is, I guess I would err on the side of getting a scan if you are concerned (but then I'm biased, having already broken a wrist).  Note that free bone mineral denisty testing is available courtesy of an AARP/Walgreens initiative as posted in one of the prior threads linked above  http://www.walgreens.com/topic/health-screenings/bus-tour.jsp

edits for clarity in response to post below
« Last Edit: January 06, 2010, 06:07:30 pm by Assurbanipal »
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #12 on: January 06, 2010, 05:42:48 pm »
John posted a NATAP paper a while ago that suggested annual vitamin D screening  each fall.  http://natap.org/2009/HIV/042209_03.htm  (Also includes info on how vitamin D regulates calcium levels)

But it is not clear (to me anyway) that simply testing for vitamin D is sufficient.  And I have learned through this process that testing blood levels of calcium is almost useless -- the body will pull calcium from your bones if it needs to in order to maintain blood levels -- so a normal blood level calcium doesn't mean that your bones are getting enough.

Given how easy the test is, I guess I would err on the side of testing if you are concerned (but then I'm biased, having already broken a wrist).  Note that free testing is available courtesy of an AARP/Walgreens initiative as posted in one of the prior threads linked above  http://www.walgreens.com/topic/health-screenings/bus-tour.jsp

No, maybe you're not understanding my question.  I said I was just tested.  My question was more if that test is OK then it's safe to say I don't need a bone scan/DEXA yet, correct?  What I took from the conversation is that one needed an out of normal on the vit D level labs before insurance/Medicare would pony up for a bone scan.
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Offline Assurbanipal

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Re: HIV MEDS and Osteoporosis
« Reply #13 on: January 06, 2010, 06:18:44 pm »
No, maybe you're not understanding my question.  I said I was just tested.  My question was more if that test is OK then it's safe to say I don't need a bone scan/DEXA yet, correct? 

Oops, sorry, I've edited my response to be more clear and mirror your use of test to refer to blood test vs scan for a DEXA scan.  (I used test in the more generic sense to include both in the previous version of the post).

I think your question boils down to whether HIV/HAART induced bone mineral loss occurs solely through lowering vitamin D levels.  I have not seen any paper that conclusively demonstrates this.  And certainly my endocrinologist didn't think getting back to a normal vitamin D level was sufficient to see whether actonel was working.  For that he is using NTx levels measured through urinalysis and will follow up with another DEXA scan after a year on treatment.

What I took from the conversation is that one needed an out of normal on the vit D level labs before insurance/Medicare would pony up for a bone scan.

Note, the link to a free bone mineral density test without invoking Medicare (and you need not be a member of AARP either, for you young and spritely types :)  )
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline veritas

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Re: HIV MEDS and Osteoporosis
« Reply #14 on: January 06, 2010, 06:34:03 pm »

Miss P,

I believe the answer to your question is no, not necessarily. There are plenty of other factors that can affect bone density even if vitamin D levels are normal (viread,smoking being sedentary,excessive caffeine,age etc.)
I'm sure medicare will pay for a scan if you have any of the risk factors, the cost of a scan is around 200.00. Another good reason is to get a baseline especially with HIV.

v


Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #15 on: January 06, 2010, 06:43:29 pm »
Actually after posting that I was reading something elsewhere and it actually seems that I'd have an easier time getting a scan covered by Medicare than I would with private insurance.  Go Socialism!  I'll bring it up with my doctor again I guess but he's one of the top doctors here and he didn't seem to see the need for it.  Then again I've been around the block enough times to know that all of a sudden a year will go by and they'll all be wanting to do it.  Still seem like a bit of a fuzzy area and all with the topic.

Knowing this area if I press the case I'm sure there's probably even a clinical trial/study going on somewhere about it.
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Offline Inchlingblue

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Re: HIV MEDS and Osteoporosis
« Reply #16 on: January 06, 2010, 08:14:43 pm »
I guess I'm going to give that big Walgreen's/AARP bus a go, it'll probably be a madhouse.

I started Truvada recently and take vitamin D/Calcium and work out fairly regularly so I'm not expecting to hear that my bones are brittle but, hey, ya never know.

What Sean said about Larry Kramer being able to suppress the virus by taking Truvada once a week just floored me. I'm convinced we're all taking more of these drugs than we need, it's very upsetting but I don't have the emotional energy to deal with it right now (take a test to see levels, etc.)

Sean Decker (blogs on poz.com) takes his meds one week on, one week off (Reyataz/Norvir/Truvada) and it works for him.

Question to Sean: Do you know what else Larry K is taking for the HIV? What precisely is his regimen and dosage? Thanks ;)
« Last Edit: January 06, 2010, 09:48:19 pm by Inchlingblue »

Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #17 on: January 06, 2010, 09:36:32 pm »
No offense to Larry K., S. Decker or S. Strub but I just need more than tidy anecdotals to go on.  I don't have enough options remaining with meds to play around like that.
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Offline Inchlingblue

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Re: HIV MEDS and Osteoporosis
« Reply #18 on: January 06, 2010, 09:46:57 pm »
No offense to Larry K., S. Decker or S. Strub but I just need more than tidy anecdotals to go on.  I don't have enough options remaining with meds to play around like that.

I totally hear what you're saying. And that's just my point, we should not have to rely on "tidy anecdotals." 

I think more and more studies will show that Induction Maintenance Therapy might work after all (there are ongoing studies and others about to start that are looking at this). It was looked at in the past and was found not to totally work but with the new and better drugs that might change. We'll see.

Keep in mind that both Larry K. and Sean Decker have had HIV for a very long time (as has Sean Strub) and I'll bet they also have few options so it's pretty ballsy of them to try it, we're not talking newly-diagnosed treatment-naive people here (which makes it all the more remarkable).

I think Ann mentioned that her husband (or "partner," not sure if they're married) had one of those tests done to see the levels of drug and he's taking less Sustiva because of it.

It just can't be good to take more drugs than necessary but it's definitely risky to customize one's dosage.
« Last Edit: January 06, 2010, 10:06:40 pm by Inchlingblue »

Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #19 on: January 06, 2010, 10:35:24 pm »

Keep in mind that both Larry K. and Sean Decker have had HIV for a very long time (as has Sean Strub) and I'll bet they also have few options so it's pretty ballsy of them to try it, we're not talking newly-diagnosed treatment-naive people here (which makes it all the more remarkable).

Oh, I know plenty of people infected as long as me that haven't cycled through the number of meds that I have, nor are they even on a standard HAART + once extra HIV med combo like me.  It's only ballsy of them depending on how many combo options they have remaining/what their resistance profile is like.

Larry Kramer is 30 years older than I am so really I'm not going to sit here and discuss osteoporosis issues in the same way.
"I’ve slept with enough men to know that I’m not gay"

Offline YaKaMein

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Re: HIV MEDS and Osteoporosis
« Reply #20 on: January 07, 2010, 04:02:26 am »
Miss P .... hope this helps
When it comes to screening for Osteoporosis, some like me, simply don't fit the profile. But... given tenofovir [a drug component in Viread, Truvada & Atripla] may have some link to reduced bone density, maybe screening for it beyond vitamin-D deficiency is worth a looksie with DEXA.

Last spring I asked for a baseline DEXA scan. My doc balked at the idea. I revisited it four months later. She still thought it was an unnecessary referral and probably would not be covered by Medicare. She was right since Medicare only covers DEXA with a diagnosis of osteopenia, osteoporosis or Cushing's Disease.
So short of breaking a hip, original Medicare basically plays chicken or egg for DEXA screening.  ???

Hmmm, since I was not to be deterred, I wanted the damn baseline scan anyway. I contacted two imaging centers for pricing [about $200+] and explained my situation. I learned that even without those diagnoses, there is a contracted price for Medicare recipients [about $75]. I'd have to sign that I knew that I might be billed for the contracted price if not covered. All I needed from the doc was the begruntled referral.  ;D

Turns out I have the spine of an 87-yr post-menopausal female [hardly ME] and my doc had to eat a little crow! >:(  We then looked at my vitamin-d levels (very low), testosterone, and thyroid (both normal). Am treating vit-D def. , will rescan this Spring [without any dramatic reluctance I bet] and determine if treatment [bisphosphonates, etc] will be necessary.

There's inadequate research regarding HIV and osteoporosis right now, particularly regarding prevention in MEN.  Hopefully, this will change. If you're on HAART that contains tenofovir, or other risk factors for this, you might wanna get a baseline DEXA scan.

More importantly, daily supplementation of both calcium and vitamin-D seems a no-brainer.

In the meantime to screen for osteoporosis,
  I'd start with testing vitamin-D and testosterone levels first. If low, then consider treatment to restore normal levels.

  Regarding DEXA, get a baseline scan and go from there.

You may have to wrangle with your primary care doc a bit. But you won't know if there's any bone loss .... until you break a bone or shrink an inch! We all know every inch counts. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Miss Philicia

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Re: HIV MEDS and Osteoporosis
« Reply #21 on: January 07, 2010, 10:04:07 am »
That's still confusing because I don't understand why you didn't test for vit D levels before getting the DEXA scan.

Also, in the end what exactly were you billed by Medicare?  Additionally, if you'd gotten the low vit D level test before the scan then wouldn't you have had the necessary diagnosis for Medicare to just cover everything?  Like I said before, I was tested for vit D level and it was fine, so I'm just still not clear on things here.  Have we yet had a person in this thread state that they had "normal" vit D levels yet then flunked a DEXA scan?

I'll also add that you've only been on tenofovir a few years, but looking at your diagnosis numbers you must have been infected but without treatment for quite some time, so it makes me wonder if at least half of this issue is just HIV infection.  While I don't doubt the tenofovir connection, we all need to keep in mind that seemingly everyone on treatment these days is on this medication, so the link may seem larger than it is in the absence of better data.

PS: is it too much to ask you folks here to put your age in your profile?  It's kind of important to issues like osteoporosis, and every time I look nobody puts the damn age in there -- what's up with that?
"I’ve slept with enough men to know that I’m not gay"

Offline Inchlingblue

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Re: HIV MEDS and Osteoporosis
« Reply #22 on: January 07, 2010, 10:47:34 am »
YaKaMein:  Have you been taking vitamin D/calcium supplements the whole time you've been taking tenofovir?

Just curious since I'm taking Truvada.

Thanks.
« Last Edit: January 07, 2010, 10:50:06 am by Inchlingblue »

Offline Assurbanipal

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Re: HIV MEDS and Osteoporosis
« Reply #23 on: January 07, 2010, 02:27:58 pm »
That's still confusing because I don't understand why you didn't test for vit D levels before getting the DEXA scan.

Also, in the end what exactly were you billed by Medicare?  Additionally, if you'd gotten the low vit D level test before the scan then wouldn't you have had the necessary diagnosis for Medicare to just cover everything?  Like I said before, I was tested for vit D level and it was fine, so I'm just still not clear on things here.  Have we yet had a person in this thread state that they had "normal" vit D levels yet then flunked a DEXA scan?

I'll also add that you've only been on tenofovir a few years, but looking at your diagnosis numbers you must have been infected but without treatment for quite some time, so it makes me wonder if at least half of this issue is just HIV infection.  While I don't doubt the tenofovir connection, we all need to keep in mind that seemingly everyone on treatment these days is on this medication, so the link may seem larger than it is in the absence of better data.

PS: is it too much to ask you folks here to put your age in your profile?  It's kind of important to issues like osteoporosis, and every time I look nobody puts the damn age in there -- what's up with that?

Miss P

Your post implicitly assumes that the longer you have been on viread the more likely one is to have a problem.  While that seems intuitive, there's been studies that indicate that the viread effect may be more in the nature of a one time decrease in bone mineral density that occurs over the first 24 to 48 weeks.  Additional deterioration my be due more to HIV or other factors.  

In fact, even the viread prescribing info mentions this nowadays in the section on bone mineral density.  Since it may be helpful, I've reproduced it below. (emphasis added)

5.6 Decreases in Bone Mineral Density
Bone mineral density (BMD) monitoring should be considered for patients who have a history of pathologic bone fracture or are at risk for osteopenia. Although the effect of supplementation with calcium and vitamin D was not studied, such supplementation may be beneficial for all patients. If bone abnormalities are suspected then appropriate consultation should be obtained.

In HIV-infected subjects treated with VIREAD in Study 903 through 144 weeks, decreases from baseline in BMD were seen at the lumbar spine and hip in both arms of the study. At Week 144, there was a significantly greater mean percentage decrease from baseline in BMD at the lumbar spine in subjects receiving VIREAD + lamivudine + efavirenz (-2.2% ± 3.9) compared with subjects receiving stavudine + lamivudine + efavirenz (-1.0% ± 4.6). Changes in BMD at the hip were similar between the two treatment groups (-2.8% ± 3.5 in the VIREAD group vs. -2.4% ± 4.5 in the stavudine group). In both groups, the majority of the reduction in BMD occurred in the first 24–48 weeks of the study and this reduction was sustained through Week 144. Twenty-eight percent of VIREAD-treated subjects vs. 21% of the stavudine-treated subjects lost at least 5% of BMD at the spine or 7% of BMD at the hip. Clinically relevant fractures (excluding fingers and toes) were reported in 4 subjects in the VIREAD group and 6 subjects in the stavudine group. In addition, there were significant increases in biochemical markers of bone metabolism (serum bone-specific alkaline phosphatase, serum osteocalcin, serum C-telopeptide, and urinary N-telopeptide) in the VIREAD group relative to the stavudine group, suggesting increased bone turnover. Serum parathyroid hormone levels and 1,25 Vitamin D levels were also higher in the VIREAD group. Except for bone specific alkaline phosphatase, these changes resulted in values that remained within the normal range. The effects of VIREAD-associated changes in BMD and biochemical markers on long-term bone health and future fracture risk are unknown.

Cases of osteomalacia (associated with proximal renal tubulopathy and which may contribute to fractures) have been reported in association with the use of VIREAD [See Adverse Reactions (6.2)].
The bone effects of VIREAD have not been studied in patients with chronic HBV infection.

http://www.gilead.com/pdf/viread_pi.pdf

It is also interesting to see that vitamin D levels were generally higher in the viread arm of the cited study, while indicators of bone mineral loss were also higher.  This would seem to indicate a normal vitamin D reading is not necessarily protective.

But I can't help you with a specific counterexample myself.  Personally I failed the falling test first, then the DEXA, then the vitamin D.

I don't understand why docs are making it so hard to get a DEXA scan though.  They are quite inexpensive compared to most other tests.

A -- 53 and not quite a half (but you knew that from my profile  :) )

edit--formatting
« Last Edit: January 07, 2010, 02:30:36 pm by Assurbanipal »
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline John2038

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Re: HIV MEDS and Osteoporosis
« Reply #24 on: January 07, 2010, 03:28:18 pm »
If it may of any interest.

Studies in HIV-negative people have found a relationship between LDL cholesterol that has been distorted with too much oxygen and the production of a blood factor from T cells that destroys bone. If confirmed in people with HIV, this might be a partial explanation of their low BMD. Other risk factors, such as less physical activity, decreased intake of calcium and vitamin D, cigarette smoking, alcohol use, depression, cocaine and heroin use, and low testosterone levels are also seen in people with HIV.

In one study of people taking HIV treatment, BMD was reported to be low in 52% of people, and an additional 10% had actual osteoporosis, a bone disease leading to increased risk of fractures. What's interesting is that this effect doesn't seem to be affected by HIV treatment. One study found greater levels of osteopenia (which comes before osteoporosis) in people with HIV regardless of whether they were on HIV treatment. Older age was an important factor in these findings.


Source

Offline YaKaMein

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Re: HIV MEDS and Osteoporosis
« Reply #25 on: January 07, 2010, 06:41:10 pm »
That's still confusing because I don't understand why you didn't test for vit D levels before getting the DEXA scan.

A Great question ... I asked my doc. Her response was that we didn't need to. Current standards of care don't suggest routine vit-D testing. Though, it may be beneficial to do so, research and analysis don't yet indicate this. Maybe it should, but that's not my call.

I suspect that many physicians might look at a 48yr old, biracial, non-smoker male of avg weight with no hx of extended steroid or immunosuppressant therapy, no hx of fractures ... as being low risk for osteoporosis. Adding to this is that I've only been on HAART since mid-06 and have had excellent virologic control. Can I get a TMI now? LOL

Also, in the end what exactly were you billed by Medicare?  Additionally, if you'd gotten the low vit D level test before the scan then wouldn't you have had the necessary diagnosis for Medicare to just cover everything?  Like I said before, I was tested for vit D level and it was fine, so I'm just still not clear on things here.  Have we yet had a person in this thread state that they had "normal" vit D levels yet then flunked a DEXA scan?

Prices will vary locally but my out-of-pocket cost ended up at <$15. Hardly, worth the tuggle with my doc over having a simple preventive scan that I was willing to pay for. As with any medical test, I couldn't just order it myself. Medicare did pay for my DEXA scan since I ended up with a diagnostic bone loss. Had I a normal scan, my understanding is that I'd be responsible for the contracted price. It was a financial risk I could afford so I would have a baseline reading.

NO, Medicare is clear what is covered regarding this. Sources: my Medicare book, medicare.gov and the imaging center calls. Simply having a vit-D deficiency is not a covered diagnosis for DEXA coverage. [Note the post by Assurbanipal: where Vit-D levels were normal in the study, even though BMD was decreased in Viread arm.]

I'd take from this to insist on a scan regardless of your vit-D levels. Contributing factors are known to be associated with osteoporosis [age, gender, HIV status, et al but definitive specific causes are unknown]. Regardless of why I ended up with a lumbar spine T-score on the DEXA of -3.1 is irrelavant; the fact is I did. Barring an error DEXA reading, I now believe I have considerable bone loss and am proactively taking action. Rather than taking osteoporosis drugs yet, we're trying to eliminate other factors to see if we can reverse the loss.

I'll also add that you've only been on tenofovir a few years, but looking at your diagnosis numbers you must have been infected but without treatment for quite some time, so it makes me wonder if at least half of this issue is just HIV infection.

No sweat, I get this alot: I know my infection occurred with my rape in 04. [see my very first post] I chalk my rapid immune decline to who knows??. Many things in my life fit the 'norms' and some things like bone loss don't: who knows??

While I don't doubt the tenofovir connection, we all need to keep in mind that seemingly everyone on treatment these days is on this medication, so the link may seem larger than it is in the absence of better data.

Gotta agree that we need better data for osteo changes concerning tenofovir, HIV infection, etc. especially regarding men.

PS: is it too much to ask you folks here to put your age in your profile?  It's kind of important to issues like osteoporosis, and every time I look nobody puts the damn age in there -- what's up with that?

My age is now there Miss P [though I made it no secret in these posts]; it could be that if the profile didn't ask for birthdate, more might put an age.

 ;) -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline YaKaMein

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Re: HIV MEDS and Osteoporosis
« Reply #26 on: January 07, 2010, 07:07:05 pm »
YaKaMein:  Have you been taking vitamin D/calcium supplements the whole time you've been taking tenofovir?

Just curious since I'm taking Truvada.

Thanks.

Hey Inchingblue,
NO, I started taking a multivitamin with minimal Vit-D [400 IU] and subpar amts for calcium [300mg] daily about six months into HAART, start of 07.

After joining the forums, I saw some posts about osteoporosis and tenofovir in fall 08. I then started taking  1000 IU of vit -D and 600 mg calcium.

I currently take 2000 IU vit-D and 1200 mg calcium [one 600 mg pill at breakfast and dinner].

Like most, I have no idea how long I've been vit-D deficient. Apparently, this deficiency is VERY common and most have people are clueless since it is not a routine test; no matter how easy and inexpensive it may be to perform.

My understanding is that when vit-d levels are low, mega doses of 50K IU are needed for a period to become sufficient. I did an 8-wk treatment earlier and am finishing a 6- week round now.

We'll see in a few weeks, if I my scan improves from last summer. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

 


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