POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Assurbanipal on October 22, 2008, 11:34:35 am
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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
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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
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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 :-*
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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.
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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.
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Update.
After tests and various doctor discussions the winner is (...drum roll):
Generic Fosamax and Vitamin D/ Calcium supplements.
Regards
A
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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
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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).
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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
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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
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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.
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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
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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
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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
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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
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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
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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.
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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
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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...
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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.
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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
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talk about throwing one 'under the bus' .. but seriously ...
thanks for the info A ... not heading my way tho ... maybe others. Y
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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.
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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
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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
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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
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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?
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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
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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
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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.
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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
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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.
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Another update of this ancient thread -- I'm "cured" !!!
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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
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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...
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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
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It is very fast and safe and noninvasive/painless. Grandmoms do it, so can we! And we should.
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will get it done
thanks
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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