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Author Topic: osteopenia / HIV Related Bone Loss  (Read 3530 times)

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Offline lars1275

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  • Posts: 3
osteopenia / HIV Related Bone Loss
« on: February 10, 2008, 08:04:12 AM »
I have been battling osteopenia / HIV related bone loss for the last 6 months (dx due to stress fractures in my tibia and femur).  On crutches for 4 months and a walking cast for 2 months.  Now in physical therapy -- with the stress fractures returning now that I am using my leg again.  Have been on Foxamax, Vit D & testosterone for this issue, but obviously it isn't working. 

Is anyone else experiencing this problem?  What is your Tx?  What are you/your Dr. doing? 
Any other advise, web sites, info you can pass along? 

THANKS! :-\

Offline Matty the Damned

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  • Ninja Please
Re: osteopenia / HIV Related Bone Loss
« Reply #1 on: February 10, 2008, 08:11:15 AM »
Matty the Damned has osteoporosis of the spine and osteopaenia of the hips primarily as a result of taking prednisolone for an auto-immune disorder. Apparently AZT didn't help either. He feels your pain. It sucks.

I don't take any particular medication for it, opting as I have for a calcium rich diet. AIDSmeds has some pretty impressive lessons on this stuff. Just click on the lessons link in the top left hand corner of the page.

Oh and welcome to the forums. :)

MtD

Offline BT65

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Re: osteopenia / HIV Related Bone Loss
« Reply #2 on: February 10, 2008, 08:36:31 AM »
I  have osteoporosis in my spine and my hips.  I've heard that resistance exercise is supposed to work well for this, the building up of the muscle around the bone for support etc.  I'm on no medication for this currently. 

Yes, welcome to the forums.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline lars1275

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  • Posts: 3
Re: osteopenia / HIV Related Bone Loss
« Reply #3 on: February 10, 2008, 10:31:39 AM »
THANKS! and THANKS for the welcomes to the site.  Anyone else out there have info/ideas.....

BobF

  • Guest
Re: osteopenia / HIV Related Bone Loss
« Reply #4 on: February 11, 2008, 10:34:14 AM »
Hi ... I, too, have been battling osteopenia.   Multiple painful stress fractures, walking casts, therapy, etc.     We found that Fosamax, large supplements of Vitamin D3, calcium and time have reduced their occurence.   (There was also some supposition that starting HIV meds might have helped.)   I now get regular annual DEXA scans to monitor how it's progressing.   

I hope you have similar progress in this battle!

Offline Matty the Damned

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  • Ninja Please
Re: osteopenia / HIV Related Bone Loss
« Reply #5 on: February 11, 2008, 10:44:58 AM »
Fosamax received some bad press here in Australia late last year.

Thousands of Australians have been prescribed drugs called bisphosphonates to treat conditions such as osteoporosis. But in hundreds of cases, the drugs have been linked to a ghastly side effect where the jawbone actually rots away.


(link)

I must stress that the link I've provided here is not to a scientific/medical site, but to a respected current affairs television programme on the Australian Broadcasting Corporation. The ABC is the state owned national broadcaster in Australia. It is wholly funded by the Australian government and is prohibited by law from taking money from commercial sources. There is no advertising on the ABC.

Thus it has a reputation for rigorous and independent reportage.

That said, the information in the provided link is from a journalistic source and must be considered in that context.

MtD

Offline Winiroo

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  • Posts: 2,082
  • Positive since 1991
Re: osteopenia / HIV Related Bone Loss
« Reply #6 on: February 11, 2008, 11:25:46 AM »
My boyfriend has osteopenia. He is on testosterone, lots of calcium and I'm not sure what else. He's been poz 18 years.

Offline lars1275

  • Member
  • Posts: 3
Re: osteopenia / HIV Related Bone Loss
« Reply #7 on: February 12, 2008, 07:30:20 AM »
 ;D Once again:  THANKS to everyone for their posts!  APPRECIATED!

Offline joemutt

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  • Posts: 1,041
Re: osteopenia / HIV Related Bone Loss
« Reply #8 on: February 12, 2008, 10:49:35 AM »
Have this on my spine and neck vertebrae, had bone density test which confirmed this.
I take calcium (always with some fat). I get massages. Do some yoga.
added: I'm on meds for 10.5 years (viramune, viread, epivir)
« Last Edit: February 12, 2008, 10:53:26 AM by joemutt »

Offline gerry

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  • Joined AM Feb 2003
Re: osteopenia / HIV Related Bone Loss
« Reply #9 on: February 12, 2008, 10:19:39 PM »
Hello Lars,

Are you on antiretrovirals?  Tenofovir, for instance, has been linked to bone loss in some cases.  Perhaps adding something like salmon calcitonin (Miacalcin) available in nose spray might help, but I haven't seen studies on it with bone loss related to HIV.  Something worth discussing with your doc.

Gerry

Offline rstar

  • Member
  • Posts: 7
Re: osteopenia / HIV Related Bone Loss
« Reply #10 on: June 23, 2011, 06:07:11 AM »
found this through medscape.com

Alendronate, vitamin D and calcium for the treatment of osteopenia/ osteoporosis associated with HIV infection.
Mondy K, Powderly WG, Claxton SA, et al. Presented at the 10th conference on retroviruses and opportunistic infections, Boston, February 10-14, 2003.


from the source:

"Osteopenia and osteoporosis are frequent complications of HIV infection and/or its treatment. Alendronate is the only bisphosphonate approved for the treatment of osteoporosis in men and women. We conducted a 48-week prospective, randomized, open-label study to evaluate the effects of alendronate, vitamin D, and calcium supplementation on bone mineral density (BMD) in patients with HIV infection..."

http://www.ncbi.nlm.nih.gov/pubmed/15764959

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: osteopenia / HIV Related Bone Loss
« Reply #11 on: June 23, 2011, 01:48:49 PM »
Hi rstar

This is a 3 year old thread ... 

and that is an 8 year old paper -- it was an important one, but there is a lot of updated information on osteopoenia and osteoporosis in the lessons http://www.aidsmeds.com/cn/printView.php?page=/articles/Bones_7549.shtml&domain=www.aidsmeds.com
if you want general information.

If you have a personal question or situation to describe you might want to start your own new thread -- there are several of us on treatment for this around the forums who would be glad to try to be helpful.

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 rstar

  • Member
  • Posts: 7
Re: osteopenia / HIV Related Bone Loss
« Reply #12 on: June 23, 2011, 02:22:44 PM »
lol i had no idea they were so out of date, both! lmao.

Offline GSOgymrat

  • Member
  • Posts: 5,009
  • HIV+ since 1993. INTJ
Re: osteopenia / HIV Related Bone Loss
« Reply #13 on: June 23, 2011, 04:35:35 PM »
Damn zombie thread!
« Last Edit: June 23, 2011, 04:38:27 PM by GSOgymrat »

Offline Jeff64

  • Member
  • Posts: 255
Re: osteopenia / HIV Related Bone Loss
« Reply #14 on: June 26, 2011, 09:40:53 PM »
Osteopenia here, too.
I took one of those bone drugs for about a year. My new Dr took me off it and now I just do calcium and vitamin D. I found I had weak bones when I kept breaking ribs all the time. ;D

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: osteopenia / HIV Related Bone Loss
« Reply #15 on: June 27, 2011, 09:40:42 AM »
Fosamax received some bad press here in Australia late last year.

Thousands of Australians have been prescribed drugs called bisphosphonates to treat conditions such as osteoporosis. But in hundreds of cases, the drugs have been linked to a ghastly side effect where the jawbone actually rots away.


(link)

I must stress that the link I've provided here is not to a scientific/medical site, but to a respected current affairs television programme on the Australian Broadcasting Corporation. The ABC is the state owned national broadcaster in Australia. It is wholly funded by the Australian government and is prohibited by law from taking money from commercial sources. There is no advertising on the ABC.

Thus it has a reputation for rigorous and independent reportage.

That said, the information in the provided link is from a journalistic source and must be considered in that context.

MtD


Due to the above my dental work is now carried out in a clinic for people who fall into this catergory. They caught it very quickly and I have been so far only had one flair up that included infection and pain.However the Jaw is damaged.
              I have to have Dental check up every 3 months and ring the clinic at the first sign off infection . My meds are

PROTELOS---STONTIUM RANELATE-----this replaced bisphosphonates-----2 grams dissolved in 125 mlls off water-----

CALCICHEW-D3   1000mg per day.   

TESTOGEL------ 50 mg a day.

I received dia off osteoporosis12 years ago during investigation into extreme peripheral neurophathy. This Jan I broke my right ankle in two places and chin bone---- operation to fit three pins and cast for three months .

I walk a minimun off a mile a day and this September will have a exercise program worked out with the physios. I will also have my yearly bone density scan, ,by the end off the day it hurts and I have had to mentally do a lot off work to free myself from seeing bone breaking disasters every where. I will post  if anything new develops and/or I come across usefull info. Suitable exercise is important
Theyer

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mikeyb39

  • Member
  • Posts: 923
Re: osteopenia / HIV Related Bone Loss
« Reply #16 on: June 30, 2011, 11:05:45 AM »
hi all,
i know this is an old thread, but figured i add to it since its here again.  I've been having horrible knee pain, my right knee i can hardly bend it, something is going on, sometimes it gets better, but when i go to gym and do simple cardio it aggrevates.  I just wonder if there are stress fractures in my knee or if its because i'm now 40yrs old lol.  I had my doctor test for vitamin D last visit and numbers were good.  I seem to be having more knee issues since i've been taking Atripla, I dont seem to have any side effects from it, but I can't help by wonder if this may be causing my muscularskeltal issues.

I will probably have to see doc about my right knee soon, but was just seeing if anyone else experinced this.

thanks
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline sfpvguy41

  • Member
  • Posts: 115
Re: osteopenia / HIV Related Bone Loss
« Reply #17 on: July 07, 2011, 12:59:51 AM »
Mikeyb39:
I have osteoporosis in lumbar spine and osteopenia in other parts.  I've switched from Truvada to Epzicom (to get rid of the Viread/Tenofovir suspected in bone loss), upped my testosterone supplement, taking Fosamax (Alendronate) weekly, Strontium supplement (680mg daily), and calcium/Vit D supplement (500/400 2x/day).  I thought that would help, hitting it all over.  Recently, after my Vitamin D tested at only 30 (minimum) after this supplementation, and reading up on increased supplementation recommendations recently out, I added a Glucosamine / Chondroitin/MSM supplement which also includes 2000 IU Vit D 2x/day.  Supposedly this greatly higher Vit D supplementation is needed for 6-8 weeks to raise levels, so I'm trying that.

That's the background, now to knees.  My bones are shot, so are my knees.  On July 20, I go under the knife for cartilage replacement in my right knee (Autologous Chondrocyte Implantation). I can't run, do a lot of stairs, jump, dance, etc anymore.  I've had knee surgeries 10+ years ago for ACL replacement and cartilage/meniscus problems, but this is new territory.

My orthopedic surgeon says it has nothing to do with the osteoporosis, and knows of my HIV status (undectable, but with these complications) but I don't buy it - i'm only 50, and the left knee is shot too. This seems out of line.

I think you should see a good orthopedic doc.  Hopefully your situation is not so bad.  Get a bone scan!
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 BT65

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Re: osteopenia / HIV Related Bone Loss
« Reply #18 on: July 07, 2011, 03:59:17 AM »
I have avascular necrosis in both knees, and they won't bend past a certain point.  And since being diagnosed, I was noticing more people w/ HIV having this.  Though from what I've noticed, most people seem to get it in their hips.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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