Osteoporois and Osteopenia O My!

[ChefDD]

     After 21 years on some form of meds, a new worry! I was just diagnosed with osteoporosis of both hips and osteopenia of my lumbar spine. I was having problems with a stiff neck and got it check out which led to many tests. Six years ago I had a bone density scan which they compared to the new one. I just had a new change of meds this past winter which turned out well. Viral load is undetectable and Cd4 count is 405. New doctor is doing  many more blood tests and urine test for clues and guidance. As I sat down to write this info, the first thing to pop up was an article on bone loss. THANKS AIDSMEDS.COM FOR BEING SO CURRENT!! I printed off some previous info took it to the new internal medicine doctor for reference. She is the best and is very attentive. I still have a good Hiv Specialist which coordinates everything else. I  feel like a general contractor sub contracting the renovation of a new house!    What has been other experiences?
     The recent change in meds was due to my mutant ninja virus getting around the old meds. I am now on Prezista, Norvir, Issentress, Intellance, and Truvada.  Also, I am hypothyroid! I need a medical degree to keep up but with this great web site and the community things will go smoothly! 
Chow
WhiteWhiskerCook

[franfrog]

I just read this and boy am I more nervous.  I have recently been having problems with my left hip and for a while I have pain in my shoulder and knee.  As the time goes on it seems to bother me more and little by little it seems to be going into each joint. 
I amdue to goto the Dr soon and will be asking about this.

[Assurbanipal]

Hi

I'm working through the osteoporosis thing too.  You might want to check out the national osteoporosis foundation site -- thought the explanations of treatment options there was useful.  http://www.nof.org/

I'm about to start a second try at bisphosphonates (risedronate / Actonel this time  -- fosamax didn't work for me). Trying to move off Truvada too (because of the Viread) but not as sure about that.

Good luck
Assurbanipal

Note -- just saw Fran's posting -- maybe ask your doc if you need a DEXA scan?  But often you don't feel pain until something is broken with osteoporosis, so wouldn't assume that is what you have.

[smalltown66]

 
I have been battling osteoporosis and osteopenia for the last year and a half.
Diagnosed as severe osteoporosis of the lumbar and cervical spine. Osteopenia in hips.
Started Forteo Injections 1 year ago. Forteo is a drug that helps build bone density. It is similar to Fortical  and Boniva and other oral drugs for osteoporosis. Forteo is for more severe osteoporosis . The injections have to be taken for two years. I have been on these injections for one year now and will soon have bone density rechecked to see if there is any improvement. I will post when I get my results back.

It appears that these conditions are becoming more and more prominent in those who have been on long term HIV therapy. Just another one of those long term side affects that we all are battling in some way or another.

I wish you luck with your treatment.


Smaltown

[ChefDD]

  Thanks for all the good information. The doctor did mention the shots but we will wait on all the other blood tests... para thyroid, vitamin d, and others. I will print off these comments and take them with me. How do you take the shots? Are they self administered? I have had corrective jaw surgery in the past and I am concerned about the side effects of some of the osteo drugs. These side effects can do something funny with the jaw bone like cause necrosis of the bone.  :-\That is why I need to be very cautious about choosing a treatment.
WWC

[smalltown66]

Cheff DD

I wanted you to know that there are quite a few sideaffects listed with the Forteo injections. You can read up on Forteo by looking at the Eli Lilly site which is the manufacturer of the medication. Or you can just google Forteo. I m sure Forteo is not for everyone but I wanted you to know it was an option.

Good luck with making your decision for what is best for you.

Smalltown66

[ChefDD]

Smalltown66
     Thanks for the info. I just completed a bundle of new lab work which included a 24  hour urine collection. I plan on having the other group of blood work done (lipid panel, cd4, viral load, multichem) before making any decision. My insurance prefers actonel over other meds. The other meds would cost me a fist full of dollars per pill. I have just started to notice things around the house which could cause me to fall... things on stairway, bathtowel for a bath rug. A very eye opening experience! During the winter, maybe I just glue airbags around my hips in case I fall and go ouch
Take good care,
Chef DD

[Assurbanipal]

Hi

 Actonel is the second bisphosphonate I've tried and it seems to be more tolerable for me than Fosamax was.  So far some joint pain and I bruise a lot easier, but otherwise OK.  So I'll be moving from daily dosage up to weekly or monthly soon.

The typical dose is weekly or monthly but if you are worried about side effects you might want to ask your doctor to start you on the daily dose to see if you have a problem.  I asked for a daily dose because when I had trouble with fosamax I was on a weekly dose -- and while I only took two doses, it took about 6 - 8 weeks to clear all the way out of my system.   

The downside of the daily dosing is that the bisphophonates are pretty inconvenient to take: it has to be first thing in the morning with a full glass of water and no other medicine; even worse, NO COFFEE!!  for a half hour to an hour -- no going back to bed either; you have to stay upright.  Of course, all of it would be easy if it weren't for the NO COFFEE 

That aside, it feels good to be doing something about the osteoporosis.

Regards
A