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Author Topic: Get those DEXA scans folks  (Read 11232 times)

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Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Get those DEXA scans folks
« on: October 22, 2008, 11:34:35 AM »
So, after nagging the ID doc, she called last night to say she went to the hospital and printed out the DEXA scan results ...and could she fax them.

And, btw, they show osteoporosis rather than osteopoenia and I should talk to the GP or the endocrinologist....

...   ???

In the press, there is a common profile of those most likely to have osteoporosis and I don't fit it very well:  I'm male,  large boned, on the heavy side, use free weights and a stepper, drink a lot of 1% milk, good levels of calcium and potassium in all my blood tests, use a 20 pound maul to split the firewood ...

But last year slipped and had the first broken bone of my life and then in January Philly posted this item in the research threads http://forums.poz.com/index.php?topic=18719.0 and the doc thinks I've been infected over a decade.  So put a DEXA scan on the list. 

The test has got to be one of the easiest possible; you just lay there occasionally moving your legs into new positions, so am a little embarrassed it took so long to get one.

Test fatigue, I guess.

But, at any rate, if you've been poz a while and haven't had one done, you might want to consider adding it to the list -- that way you can perhaps take action before a bone break.  And apparently there is some value in having a baseline test.

Me, I've been up to the lessons and suspect I see androgel in the future and maybe some other new and exciting drugs....  Sorta bummed; but no doubt it will be better than broken decrepitude...

Oh and any fellow osteporoids with stories to share welcome to comment.

Grumpily
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%

Offline Graywolf

  • Member
  • Posts: 47
Re: Get those DEXA scans folks
« Reply #1 on: October 22, 2008, 03:09:33 PM »
Good topic

I had been reading articles suggesting long term Pozzums and those over 60 getting bone density scans and asked my doctor a couple of months ago if it would be a good idea. It never crossed his mind (duh) but agreed it would be a good idea considering I'm 61 been poz over 23 years and was on Crixivan and Zerit for close to 7 years.

I was curious the only 2 places they measure are the spine and pelvic area. I asked the radiologist why just there and she said because that's where the biggest bones are located and gives a pretty good overall idea of bone density.

The results showed my spine is fine but a small amount of osteopenia in one hip. I almost freaked but my doctor said that osteopenia isn't the same as osteoporosis, but an early indicator of bone loss. I've begun taking calcium + vit D supplements; adding to the K-pax, Omega 3 fish oil, evening primrose oil and 4-6 grams of Glutamine a day, suggested by nutritionist who specializes in HIV and aging.

I was talking with a guy who said he had no clue he had bone density problems until he fell of his bike and shattered the bones in his forearm, collar bone and scapula. He was the  first person who strongly suggested I get a DEXA scan since I am a legacy long term poz

I would reccommend it to anyone who fits the profile, better to be safer than sorry later
"If we don't learn to live as brothers, we will perish as fools" - Dr martin Luther King Jr

Offline anniebc

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  • Posts: 5,942
  • AM member since 2003
Re: Get those DEXA scans folks
« Reply #2 on: October 22, 2008, 03:21:34 PM »
Hi

Been there done that..a couple of times, even though I have only been diagnosed for 6.5 years and was only 57 at the time, my ID Doc decided there was a need but I can't for the life of me remember why now..everything looks Ok at the moment, now that I'm over 60 I'm not sure if another will be needed...but it's a good idea to have one done.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline BT65

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  • Posts: 9,975
Re: Get those DEXA scans folks
« Reply #3 on: October 22, 2008, 08:15:06 PM »
I had one done a couple years ago and was diagnosed with osteoporosis.  I'm not on any med for it at the moment, other than calcium+vitamin D.  I'm only 43, but have been diagnosed for 19 years and on meds 99% of that time.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #4 on: October 23, 2008, 04:58:39 PM »
So, the actual test results came in the mail today with more details.  Worst was a T-score of -3.0 for the lumbar spine -- Went up to the surgeon general's website and extrapolating from the chart (which only goes up to age 100) it appears I have the spine of the average 105 year old Caucasian woman  :(

Low testosterone levels are a significant risk factor for osteoporosis.

Here's a couple / three references for anyone else looking for more info

2004 Surgeon general report -- http://www.surgeongeneral.gov/library/bonehealth/content.html

NIH Osteoporosis page -- http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/default.asp

National Osteoporosis Foundation -- http://www.nof.org/

Guess I'll start walking very carefully.
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%

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #5 on: January 06, 2009, 11:50:01 AM »
Update. 

After tests and various doctor discussions the winner is (...drum roll):

Generic Fosamax and Vitamin D/ Calcium supplements.


Regards
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%

BobF

  • Guest
Re: Get those DEXA scans folks
« Reply #6 on: January 06, 2009, 07:31:46 PM »
I agree with A. -- I've been on the Fosamax (generic for the last several months), Calcium, and Vitamin D due to multiple bone fractures, and have a continuing decline in my DEXA results.   I'm tested every 2 years and think it's important for all poz folks to have this test as well as thyroid tests periodically.

Bob

Offline edfu

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  • Posts: 1,084
Re: Get those DEXA scans folks
« Reply #7 on: January 07, 2009, 06:19:46 AM »
I was diagnosed with osteopenia.  I had no symptoms, so I couldn't figure why the doctor wanted me to get a scan.  When I asked him what could cause it in my case he said:  my age (66), over 25 years being HIV-positive, my HAART drugs, or my smoking.  Or all four.  Recommended Citracal (calcium + Vitamin D). 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #8 on: January 26, 2009, 10:51:31 AM »
After tests and various doctor discussions the winner is (...drum roll):

Generic Fosamax and Vitamin D/ Calcium supplements.

Or maybe not.   6% or so get hypertension (high blood pressure) from Fosamax and looks like I'm one of the lucky ones.  Never knew you could get numbers as high as 230 over 152 (feeling a little explosive here :) )

Oh well.  Onward (and downward bpwise   ;D )  Wonder what is next.
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%

Offline Jacques

  • Member
  • Posts: 171
Re: Get those DEXA scans folks
« Reply #9 on: January 27, 2009, 02:15:41 AM »
Diagnosed with mild osteopenia 4 years ago, I was prescribed a calcium+vit D supplement to help slow the progression and perhaps stabilize the bone density.  Two years ago, after reading a few articles describing the benefits of exercises based on resistance training to improve bone density, I decided to start training.  Surprisingly , last December, a new dexa-scan  showed that my bones are now perfectly normal (.."for a man of your age" added my bitchy doc). .. I'm 57. He then admitted that he had not expected such a reversal by only taking calcium+vitD  and concluded that resistance training did play a prominent part.

As I can't afford going to gym, I exercise at home ,3 times a week,  using a simple resistance machine bought on sale. I'm so proud of the results , not only on my bones but also on my silhouette. Bone improvement can bee seen from scans but my mirror shows a lot more.

wanted to share

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline YaKaMein

  • Member
  • Posts: 368
Re: Get those DEXA scans folks
« Reply #10 on: March 03, 2009, 05:40:53 PM »
Hey DEXA scan fans!

How did you negotiate getting a DEXA scan done with your physician?? Is it full body? or just spine, pelvis, and legs? Any other tests to consider.

I've been on Atripla [has tenofovir] 2.5 yrs. I want a base line reading now. Anticipate some resistance to her agreeing since I'm not exhibiting symptoms.

Open to suggestions ... proactive care beats standards of care. Thanks, YaKa

FYI: Been taking 1000IU Vit D supplements on my own for about a yr. NO Ca supplements. Never broken any bones. Have no symptoms [had shin pains late 2007, pains ceased when stopped Bactrim and later went to 3xweek for PCP prevention]. Normal Thyroid fxn and testosterone levels=normal. Healthy diet and sub-moderate exercise.
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 Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #11 on: March 03, 2009, 06:06:15 PM »
Here's a link to the national osteoporosis foundation page on testing that may be helpful http://www.nof.org/osteoporosis/bmdtest.htm


"Your healthcare provider may recommend a BMD test if you are:

A postmenopausal woman under age 65 with one or more risk factors for osteoporosis
A man age 50-70 with one or more risk factors for osteoporosis
A woman age 65 or older, even without any risk factors
A man age 70 or older, even without any risk factors
A woman or man after age 50 who has broken a bone
A woman going through menopause with certain risk factors
A postmenopausal woman who has stopped taking estrogen therapy (ET) or hormone therapy (HT)
Some other reasons your healthcare provider may recommend a BMD test:

Long-term use of certain medications including steroids (for example,   prednisone and cortisone), some anti-seizure medications, Depo-Provera®
and aromatase inhibitors (for example, anastrozole, brand name Arimidex®)
A man receiving certain treatments for prostate cancer
A woman receiving certain treatments for breast cancer
Overactive thyroid gland (hyperthyroidism) or taking high doses of thyroid hormone medication
Overactive parathyroid gland (hyperparathyroidism)
X-ray of the spine showing a fracture or bone loss
Back pain with a possible fracture
Significant loss of height
Loss of sex hormones at an early age, including early menopause
Having a disease or condition that can cause bone loss (such as rheumatoid arthritis or anorexia nervosa) "


Elsewhere it defines risk factors in a way that would appear to include HIV: "Chronic disease that affects the kidneys, lungs, stomach, and intestines and alters hormone levels "

So if you are a male over 50 or a postmenopausal female, you could argue that you fall into the class recommended for testing.

Regards
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%

Offline YaKaMein

  • Member
  • Posts: 368
Re: Get those DEXA scans folks
« Reply #12 on: March 03, 2009, 06:44:29 PM »
A, Thanks for the rapid reply ;) and the helpful links ... am checking out others too from u above.

HIV chronic disease may be my best approach. Don't see any HIV drugs,  viz. tenofovir, on their lists.

I don't fit any cited criteria being male, <50, avg ht, wt, biracial, no steroids ... just a nagging concern that I'd rather be proactive and get a baseline. I see low dose Calcium supplements and a BMD in my BVD's soon, LOL.

Thanks again A!
 -Y
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 Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #13 on: March 03, 2009, 06:56:09 PM »
A, Thanks for the rapid reply ;) and the helpful links ... am checking out others too from u above.

HIV chronic disease may be my best approach. Don't see any HIV drugs,  viz. tenofovir, on their lists.

I don't fit any cited criteria being male, <50, avg ht, wt, biracial, no steroids ... just a nagging concern that I'd rather be proactive and get a baseline. I see low dose Calcium supplements and a BMD in my BVD's soon, LOL.

Thanks again A!
 -Y


Didn't you have steroids when you had PCP?  I spent weeks on prednisone, but maybe that is because they took a while to figure out it was PCP instead of just a regular pneumonia.

Good luck
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%

Offline YaKaMein

  • Member
  • Posts: 368
Re: Get those DEXA scans folks
« Reply #14 on: March 03, 2009, 07:37:24 PM »
Good catch A. Clarity ... meant no long term use of steroids and none since May 06. I was on prednisone for only three weeks ... 10 mg 4Xday for a week, 2Xd q.w., 1 q.d. the last week ... weaning off at my insistence.

One might say I'm a pushy patient :'(  So, I'll probably get a DEXA scan one way or another. Surely Medicare will pay for it.

When is your next scan? How will u gauge improvement? no new breaks, I prey. -Y
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 Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #15 on: March 03, 2009, 09:04:10 PM »
Pushy is good.  Just giving you another tool with which to push.

Next scan?  Well, was going to do another DEXA after 6 months on the fosamax, but had to quit it.  So currently in limbo between the endocrinologist, ID doc etc.  I'm to get new NTx test results this week and see where we go with the endocrinologist from there. 

Nothing else has broken (but I stay inside when there is ice or snow)
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%

Offline YaKaMein

  • Member
  • Posts: 368
Re: Get those DEXA scans folks
« Reply #16 on: March 20, 2009, 07:45:02 PM »
As expected, got some resistance from doc to order a DEXA scan.

Since I'm taking Vit D & now low dose Calcium supplement [on my own], she asked what would I do if bone density is low? Duh, discuss treatment options!! She has concerns about prescribing Fosamax since Atripla has created hypertension and higher lipids. Her statements were about 'insufficient studies on drug interactions and inconclusive side effects",  again DUH!! I'd prefer to not take any meds. I had normal blood pressure and low cholesterol before Atripla [how illogical to be concerned about side effects now] ... do you think I'm happy on lisinopril and Lipitor??

Then there was the gatekeeping issue about cost of a scan. She'll write the order only if Medicare [am now eligible] will cover it. Neither of us wants Ryan White to be burdened. Medicare only covers the scan with a diagnosis of osteopenia, osteoporosis or Cushing's disease and only once every two years post diagnosis  ...  so preventative scanning is an not an option. Why must we break our bones first to find out why we broke them so easily in the first place? Third Duh!

Not to be daunted, I contacted a local imaging center and explained my dilemma to a patient rep. She confirmed the criteria and understood my questions about Medicare coverage. Asking about the cost of a DEXA scan, she said it was a bit pricey but Medicare patients CANNOT be billed more than a specific contracted price. [Oh really??!] I'd have sign a waiver that Medicare may not pay for it and take responsibility for billing. She assured me that my cost would be less than $100.

Short of my story is that I'll be getting my scan once I convince my doc to order it [onto phase two].

PS. Weird that my doc didn't bat an eye to ordering an MRI of my neck since I've had some annoying neck pain for over a month .. probably because I have symptoms. but who knows.

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 minismom

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Re: Get those DEXA scans folks
« Reply #17 on: March 21, 2009, 01:47:29 PM »
Not sure this will help, but Mim's PID ordered the test, after I insisted on it, based on the symptoms she was having.  She's on Medicaid and we had no problem getting them to pay for it.  Her's was a full body and the entire test took less than 3 minutes.

Hope you can get approved quickly and everything turns out well.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Assurbanipal

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Re: Get those DEXA scans folks
« Reply #18 on: March 21, 2009, 06:18:43 PM »
PS. Weird that my doc didn't bat an eye to ordering an MRI of my neck since I've had some annoying neck pain for over a month .. probably because I have symptoms. but who knows.



This is probably a bit cynical, but many practices own an MRI machine, while very few have their own DEXA setup...

I pulled out my records and unless I missed a piece that was separately billed, the DEXA scan had a retail cost of $564 -- Blue Cross negotiates price discounts which brings it down to $212.  Issuing the report on the results was another $72 retail which was $12 on a discounted basis to Blue Cross.  So the cost to my insurer was about $225.  That's comparable to average costs cited in various reports.

And it's pretty cheap compared to the average MRI cost of about $2,000.   (Cost data for MRI per Blue Cross Blue Shield Assoc http://www.bcbs.com/coverage/basics/cost/)

There's something not quite right here...
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%

Offline YaKaMein

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Re: Get those DEXA scans folks
« Reply #19 on: March 22, 2009, 01:11:42 AM »
Thanks for the support Mum ... since I'm bigger than Mini [and not half as cute], my scan may take 10 mins LOL ... but I'll eventually get a baseline.

I like your fire Assurbanipal! But, I doubt my doc's concerns are fiduciary re MRI. My ID care is in an ASO clinic funded by RW and other sources. Sometimes, little inconsistencies like this DEXA screening erupt and vexes me. It's within my means to pay for it so I'll just need her signature on the order and all will be fine.
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 Assurbanipal

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Re: Get those DEXA scans folks
« Reply #20 on: April 25, 2009, 08:39:15 AM »
Yaka (and others)

I read in the AARP rag that AARP and Walgreen's are putting on a bus tour around the US offering a variety of free medical tests.  They include some sort of bone mineral density testing. 

It is free and you don't have to be ( ahem, cough cough   :) ) eligible to join AARP.

Here's some info http://www.walgreens.com/dmi/bustour/default.jsp

Regards
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%

Offline YaKaMein

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Re: Get those DEXA scans folks
« Reply #21 on: April 29, 2009, 12:05:28 AM »
talk about throwing one 'under the bus' .. but seriously ...
thanks for the info A ... not heading my way tho ... maybe others. Y
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: Get those DEXA scans for Osteoporosis folks
« Reply #22 on: August 13, 2009, 12:21:35 AM »
Assurbanipal buddy,
Well, an update. got my DEXA two weeks ago. lumbar spine T score = -3.1, Z score = -2.8 [BMD 2.5 SD].
Am officially an osteoporosis member. Left hip T score was within normal limits. So, Medicare will pay for my next scan in two yrs.

I've followed your battles in treating this. We're exploring if I'm Vitamin D deficient or if my testosterone levels can be leveled.

My desired tx plan to be discussed with my MD:
   Intravenous Reclast [Zolecronic Acid] one time deal, increase Vitamin D supplements to 1500+IU daily      and Calcium supplements to 1000+mg daily, exercise and resistance training, repeat DEXA in 2yrs to see if BMD has improved.

Plan B: substitute Actonel monthly for one time Reclast treatment.

Plan C: if more BMD loss in 2 yrs, consider Forteo injections.

Hoping to stop or reverse bone loss if possible. Will have to watch my step and exercise levels for awhile.


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 Assurbanipal

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Re: Get those DEXA scans folks
« Reply #23 on: August 13, 2009, 12:18:47 PM »
Yaka

Sorry to hear that -- looks like your numbers are pretty similar too --my average lumbar spine T score was -3.0, a little better, but L-3 came in at -3.5!  My Z-scores are not as bad, but that's just because I'm older so they grade the Z scores on an easier scale.

Looking at your plans I have to ask if you are sure you want to go straight to the once a year / once a month drugs?  Its very convenient if it all works, but if you have a bad side effect, you are stuck with a long term drug reaction for a long time.

I had a problem with weekly Fosamax; took two doses and it took about 6 weeks to clear away the side effects.  So when starting Actonel, I got my doctor to begin with a daily dose.  It had to be special ordered and it was a pain to take, because you have to take it an hour before all the other drugs -- but that way I could make sure I wasn't going to have another problem.  Moved to the monthly Actonel now, and all I've got in the way of side effects so far is some joint pain (that moves around from the ankles to wrist to the jaw ...)  but otherwise its fine.  Still, glad I was able to do a daily version first that would clear out quicker if something went wrong.

At any rate, something you might want to think about...

Note, haven't done the testosterone to date, but was deficient in vitamin D and went on the prescription version for a while -- need to get tested again.

At any rate, good luck -- let us know what you wind up doing.

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%

Offline YaKaMein

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  • Posts: 368
Re: Get those DEXA scans folks
« Reply #24 on: August 13, 2009, 04:41:18 PM »
A,
Excellent points to consider when I meet with doc in two weeks and review labs for Vit D and T levels. At a minimum, I'm inclined to push plan B. Have to say I was surprised at the level of BMD loss. Whether it's HIV or tenovofir induced, it is what it is. I want to be aggressive in dealing with it now since I don't really fit much of NOF's criteria for those at risk. Plus, taking daily anti-resorptives, Fosamax, etc will be problematic for my lifestyle.

i didn't start Medicare until Jan 09 and wanted to keep MY costs down until eligible for tests. I started Vit D and Ca++ supplements on my own over a year ago .... just have to get off my fanny more and incorporate exercise and resistance work. She's already stated some opposition to using bisphos' when I asked for the DEXa months ago. [She also wasn't too enthusiastic about me having a DEXa either .... glad I'm a good self-advocate.] Down side with these osteo issues is that clinically, it takes time to see results or effects.

in the end, I'll rely on her experience and shared knowledge from you and elsewhere in making the best decision for my treatment. If my T & Z scores were higher I'd be able to back off some, but the severity of my BMD loss after almost 5yrs HIV infection and about 3 yrs treatment alarms me. You shoulda seen my obsession when I had PCP/MAC and told i had 6 Tcells ...  LOL! Look at me now.

Let me know how Actonel does for you. I hope you see some results and you tolerate it well.

Thanks, A.  -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 Sean Strub

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  • Posts: 13
Re: Get those DEXA scans folks
« Reply #25 on: August 31, 2009, 02:16:42 PM »
I've been diagnosed with osteoporosis as well and the endocrinologist has recommended the Reclast infusion.  The consumer reviews on it at webmd are pretty nasty.  Has anyone had experience with it?  I also have mild hypothyroidism, which may complicate the treatment.

Thanks,

Sean

Offline YaKaMein

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Re: Get those DEXA scans folks
« Reply #26 on: September 01, 2009, 11:45:49 AM »
Hey Sean and A,
For the moment, I decided to postpone direct treatment for the osetoporosis with any bisphosphonates including Reclast [zoledronic acid] infusion. So I won't have any experience with that.

Since tests determined I am Vitamin D deficient [15ng/mL], we're treating that first with weekly mega doses of  50K units and calcium supplementation, then will retest Vit D and rescan with DEXA in 6 mo and reevaluate.

here are few more sites that may help:

http://www.osteoporosistx.com

http://www.healthcentral.com/osteoporosis

http://www.shef.ac.uk/FRAX    you can determine your risk of hip fracture over 10 yrs

Another thing Sean, may sure they're speaking of a thyroid, and not parathyroid involvement. The parathyroids are instrumental in Calcium regulation, thus play a role in bone maintenance.

Lastly, thanks for creating POZ and all the hard work you continue to do.

-YaKaMein

PS: A, how's the Actonel treatment going?
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 Assurbanipal

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  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #27 on: September 01, 2009, 05:05:56 PM »
Sean

No experience with Reclast for me either, but my experience with weekly Fosamax made me a little doubtful about the wisdom of jumping onto a med with a really long half life in the body.  If it works well it is quite convenient, but if it causes a problem you are stuck with that problem for a while. . .

Hope you can find something that works for you.



Yaka

Had a fair amount of rotating joint (wrists and ankles) and teeth pain when I started Actonel, but it is gone now.  Unfortunately during the teeth pain part, they all loosed and were a bit wiggly. Biting down wrong one cracked.  The loose ones seem to have reseated themselves now but the cracked one had to be pulled.  ( Note, the dentist is pretty firm in blaming it on Actonel, ... not sure I'm entirely convinced.)

The endocrinologist says next DEXA will be after a year on Actonel -- so results will be a while.

Regards

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%

Offline Assurbanipal

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Re: Get those DEXA scans folks
« Reply #28 on: December 21, 2010, 09:30:00 PM »
Update -- this thread is old, but people occasionally find it when they search on osteoposis, so I've added my results from 18 months of treatment with bisphosphonates
____________________________
I started on Actonel.  I switched to Boniva because my drug plan changed and they would only pay for Actonel if I tried Boniva and it didn't work.  They are pretty similar. 

After 18 months on the drugs I got a new DEXA scan.

New DEXA scan results
- Bone density increased 6% to 12% depending on where it was measured
- T scores went up .3 to .5
- My hip bone is now in the normal bone density range.  The hip joint still shows osteopoenia, although less severe and my spine sitll shows osteoporosis (but also less severe).


I haven't broken any more bones.

The doctor says I should keep taking the drug "until it stops working" or for up to another 5 or 6 more years. 

I'll get another DEXA to measure progress in 18 months.
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%

Offline YaKaMein

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  • Posts: 368
Re: Get those DEXA scans folks
« Reply #29 on: December 25, 2010, 01:44:50 AM »
Good update A. Seems like the treatment has helped you and hope you continue to see improvement.

I'm still on the fence about a consult but will likely wait til this summer's DEXA to see if the Vit D therapy and Cal++ supplementation continues to see an increase of BMD. I've also been on Androgel tx for fatigue [really as 2ndary tx to the osteop] ... I've made a commitment to increase exercise also which may help too. - 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 Zohar

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  • Posts: 249
Re: Get those DEXA scans folks
« Reply #30 on: December 25, 2010, 04:30:51 AM »
Interesting topic.   Is there anyone here from the UK who's been able to move this forward with their HIV doctor? From what I can tell, most of not of all, of the people taking part in this discussion are from the States, which obviously have a different type of health care system to the one we have here. Are doctors in the UK happy to test for this and with what sort of frequency? I know my vitamin D levels are low but don't know if I have any other risk factors.

Would be interested to hear from anyone in the UK who's raised this issue with their doctor.
''Poor is the man whose pleasures depend on the permission of another.''

Offline Assurbanipal

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Re: Get those DEXA scans folks
« Reply #31 on: September 19, 2012, 01:46:25 PM »

Another update of this ancient thread -- I'm "cured"  !!!
...


of osteoporosis, at least.

My latest DEXA scan shows only osteopoenia in the spine and hip. 

Much discussion with the doc about whether to stay on Boniva (which is now generic) since there are studies out there about the danger in staying on the bone drugs for more than 5 years (its been almost 4).  But based on the DEXA results and the n-telopeptide test Boniva still appears to be strengthening the bones  so I'll stick with it for at least a little while longer.

Dropping the calcium supplement based on the blood work, which has been showing marginally high for a while (I'm single now and still buy milk by the gallon).  So one less pill too.

Specific results:
spinal bone density up another 4% for a T-score of -2.3  -- that's just over the line from osteoporosis which starts at -2.5
hip bone density got about 2% worse but is still up 9% from where I started.

The doctor said that studies show fracture rates are related most closely to spinal bone density

Cheers everyone -- hope you are doing well
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%

Offline sfpvguy41

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Re: Get those DEXA scans folks
« Reply #32 on: September 22, 2012, 02:59:53 AM »
Great news congrats. i hope to be able to say the same soon. I notice you switched to reyataz plus epzicom in Jan, same as I take now, so good to see on that plus boniva (i take the Fosamax generic) it helped...
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline sam66

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  • Keep The Faith ; Fight The Fight
Re: Get those DEXA scans folks
« Reply #33 on: September 25, 2012, 09:34:43 AM »
 Hi all,
          I been thinking about having one done,
          can anyone tell me how DEXA scan works, it like a X-ray , MRI or CT scan,

          guess what I want to know is there any danger   
december 2007 diagnosed +ve ,

Offline sfpvguy41

  • Member
  • Posts: 115
Re: Get those DEXA scans folks
« Reply #34 on: October 01, 2012, 01:19:58 AM »
It is very fast and safe and noninvasive/painless.  Grandmoms do it, so can we! And we should.
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline sam66

  • Member
  • Posts: 277
  • Keep The Faith ; Fight The Fight
Re: Get those DEXA scans folks
« Reply #35 on: October 02, 2012, 06:16:44 AM »
will get it done
thanks
december 2007 diagnosed +ve ,

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Get those DEXA scans folks
« Reply #36 on: October 02, 2012, 11:58:27 AM »
Hi all,
          I been thinking about having one done,
          can anyone tell me how DEXA scan works, it like a X-ray , MRI or CT scan,

          guess what I want to know is there any danger   

This last time was even easier than before.  Before I undressed and put on a hospital gown and laid down on a table for a few minutes and held my leg in a weird position. Pretty easy in itself.

But this time, they didn't even make me take off my underwear -- and I didn't have to hold any position except just lay there. Nothing to it except the scheduling.

Its a form of xray technolog -- with rather low radiation levels (less than you'd get in a cross country airplane flight)

Best
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%

 


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