Severe Osteoporosis

Emptybonz

I'm -3.6 in my right hip and -3.4 in my left hip. My Osteoporosis was diagnosed as severe. The doctor went straight to the Forteo for treatment.

PikaB

According to the WHO definition, "severe osteoporosis" is a T-score lower than -2.5 combined with a fracture.

EMS

Is Forteo a stronger treatment than Fosamax? Had you tried the Fosamax first?

How do you know if you have a fracture? Exray? The Dexascan doesn't show fracture, does it?

CrohnieToo

Thanks for the WHO definition of "severe osteoporosis". I've been told I have severe osteoporosis since 1996 at which time both hip and spine were lower than -2.5 but (knock on wood; knock, Knock, KNOCK) I've never had a fracture. My DEXA results have always said "high risk for fracture".

IF you can believe all my DEXA scan results my lumbar T-score last year was -4.1 and hip T-score -3.0. Yet after only 10 months of Forteo coupled with 18 months or so of scripted high doses of vitamin D and no calcium supplementation my June 06 lumbar T-score is -3.1 and my hip T-score -2.7. I have more faith in the 2003 DEXA scores which weren't as severe as the 2005 DEXA scores because the 2003 and 2006 DEXA scores were done on digital DEXA scanners and the 2005 was done on a DEXA scanner in a doctor's office.

Since not one of my DEXA scans have been done on the same machine much less by the same tech .... I'll have the most faith in next year's DEXA scan scores when I "finally" have my scan done on this same scanner as I had this year plus the odds are quite good that my 2007 scan will even be done by the same tech as this year!

Keep in mind that these DEXA scans are just another tool, another test, to diagnose and monitor our health problem and NO medical test is 100% accurate. Somewhere along the line a human or humans are involved in the process and no human is perfect.

EMS

How would having the same machine, but a different tech make a difference? Just curious.

Hopeprayer

Hi! Did Fosamax help (and i don't even know if you are considering hip surgery-so please forgive in advance--) does it help for pain?

many thanks, and I am sorry you are in such pain, i know how you feel.
Much care,
Rhonda

EMS

Rhonda, I just wanted to let you know that Fosamax has helped me. On year one I experienced 5% increase in my hip (I "only" had osteopenia in my hip) and 3% in my lumbar. I can't find my Tscores at the moment, but my L4 (think) was 3.0 and the others were from -2.5 to -2.7 in the lumbar.

The Dr recommended continued fosamax for 2 years and then to come back for another dexi. I am due for my next dexi in December, but I may go earlier since my insurance covers it.

I hate taking the fosamax because it is so new, etc. But, it has helped. I play tennis (doubles) about 5 times a week because I hate to work out and I am hoping this helps. The Dr had said tennis was great, but I don't know if I believe that because it doesn't seem like it is weight bearing like working out with machines.

How do you all feel about tennis? Do you think it is good enough?

PikaB

Forteo works by growing new bone. Fosamax (and the other bisphosphonates) work by slowing down the process of old bone being removed. At the present time, the clinical studies seem to indicate that the best BMD gains are made by taking Forteo for two years, and then switching to bisphosphonates. But there are potential problems with bisphosphonates; a news article a couple days ago (you can find it on Google News or Yahoo News) was titled "Drugs Intended to Strengthen Bone May Cause Serious Side Effects". That article mentioned:
Bisphosphonate Estimated Half Life
A partial list
Boniva = 4.6-15.3 hrs for IV 2mg after 2 hrs (IV and Oral)
Boniva = 5 - 25.5 hrs for IV 4mg after 2 hrs (IV and Oral)
Bonefos = 13 hrs for IV (IV and Oral)
Aredia = 28 +/- hrs (IV and Oral)
Zometa = 146 hrs (IV)
Actonel = 480 hrs (Oral)
Fosamax = 10 years (Oral)

I think the 10 year half life of Fosamax makes it the least desirable of the bisphosphonates, because it means that if additional side effects from long-term use of Fosamax are discovered, even if you stop using it, it will remain in your body for many years to come.

CrohnieToo

Well, if you are upright you spine, hip and leg bones are bearing weight. In tennis you are very active, which stimulates circulation, and you are doing some "jumping" at times reaching for the tennis ball coming to your side of the court. Plus recent research indicates that arm exercise (via an arm cycle) increased the circulation and strength in the leg muscles as well. And you certainly are using your arms playing tennis. There may be other forms of exercise or other exercises that would do more faster - but - compliance is the key to any exercise or medication program so whatever will keep you doing and moving is bound to be one of the best methods of exercise for you and your osteoporosis.

Outside of bicycle riding. There's been some research that the usual bike seats actually can cause some hip pain and/or damage in those who cycle a lot such as marathon bikers, etc. That's not to say we shouldn't use our exercise bikes or ride our two wheelers. It is to say that if you feel any discomfort doing so look to find another seat style that doesn't cause any discomfort.

Emptybonz

You asked if I tried Fosamax before Forteo. No, Forteo is what they put me on after I was diagnosed (due to the severity of my Osteoporosis). The doctor said I will be on Forteo two years and then be on a maintenance drug. She mentioned Fosamax or Actonel. I am also doing lots of walking every day, weight-lifting, taking much more calcium, learning to like yogurt, and have stopped drinking a coke for lunch (which I hated to give up!).

NYNJmom

Hi Severe Osteoporosis: I was on Fosamax for 4 yrs. and had additonal vertebrae fractures, Fosamax does not build new bone, it maintains the bone you have. It did nothing for me as I have 5 compression fractures of my vertebrae. I'm on the final stages of Forteo treatment ( Forteo actually builds new bone) and I do physical therapy once a week. My new bone density test was very encouraging, my spine had a major increase. But, my dilemma is that in the next 2 months I need to stop the Forteo (only allowed on it 2 yrs.) and they want me to go back on Fosamax. Does anyone have any suggestions as what my next move should be!!!!!

taape

NYNJmom,
I'm almost at the end of 2 years on Forteo and I'm wondering the same thing as you - what to do for treatment next. I can't take biophosphates due to stomach problems and I don't want to loose all the gains in bone density I've gotten. I wonder about being on Forteo longer if insurance would pay for it.

BrittleBones

I took Forteo for the specified 2 years and at the end of my course of treatment had a spontaneous hip fracture. I've not been on any medication since then (8 months) but my doc wants me to start taking Boniva. I went in for a DEXA scan 3 weeks ago and I'm waiting for the results. It's the first DEXA scan that I've had since right before starting the Forteo almost 3 years ago. For some reason it takes almost a month to get the results back from DEXA scans where I live. So...I don't have any "numbers" to compare my bone density to post Forteo to pre- Forteo, just the clinical evidence of the spontaneous hip fracture and a subsequent femur fracture that came on the same side as my hip about 3 weeks after the hip was replaced. At this point I'm not sure what I need to do. Do you think there comes a time when there is just NOTHING left to help our bones and you have to give up??? I'm only 50 and I feel like my bones are like match sticks! KathyMac

legallyblondied

KathyMac.....question.....what happened to your new hip that was replaced after the fractures? Pain? Another replacement or are you ok? Karen