Osteoporosis Advice

[sahuaro]

Once again, thank you so much, Maria, for posting this site. Lots (tons) of info here which reminded me of my struggle when initially diagnosed with osteopenia, with whether I should take the biophosphanates my docs were pushing on me--according to Ott, I probably shouldn't be taking them. The only reason I began to take them was my fear that I would be turned down for ADR.
I had read an earlier paper by her regarding interpretation of DEXA with women of short stature (in that paper, she did not specify under 5 feet) and presented this as an argument against the diagnosis to my PCP; he actually consulted at the medical school here and they rejected her argument...which doesn't mean anything about the validity of her data, just that I lost my appeal to my PCP.

Anyway, what's most relevant and concerning for me now is the caveat about stopping the med after 5 years...Another discussion to have with my PCP, gynecologist, and perhaps surgeon who implanted the ADR?

[ans]

OK. Any advice? I hear that there's some genetic bone-building meds. but I am not sure what. One doctor suggested, as mentioned, a yearly infusion of Reclast but I think this doesn't grow bone.

I have GERD so this might be a treatment consideration.

I also have heard that Forteo is in generic but others say no. I"m thinking of the injections into the fat pads every day or something like that.

Very disconcerting Bayla the long-term ramifications of these drugs and what they really might do. Also, from here? I read that the bone quality may not be the best as I am contemplating fusion which is insane due to my extensive DDD.

Be well people.

[Maria]

Get a few more opinions tho I think if you don't have lumbar osteoporosis or even osteopenia you might want to go with the Reclast. You probably aren't going to experience a hip fracture for another 25 years or so...

Or what do I know(really)..just throwing my 2 cents out there. There are others far more qualified than me to give such opinions such as MDs specializing in osteoporosis. I see a Rheumatologist that specializes in treatment for osteoporosis and prescribes the Forteo for me. If it weren't covered by the insurance and I couldn't qualify some other way~ I'd have to forego this treatment as well at current cost.

I was offered fusion and ADR while my lumbar bone density was still within the range of osteopenia vs. osteoporosis. No one was concerned with my hip values (just my GP). Now whether that's the most prudent medicine but ask the spine specialists you've seen and/or are going to see or contemplate surgery with.

[ans]

Thanks Maria!

Amazing that you were a surgical candidate when your bone density was better. May I ask why your GP was concerned about your hip values? Was this b/c spinal bone density is hard to interpret, that using hip values as a proxy for spine density is OK, or what?

The radiologist's report said that my OK bone density readings could be off-base is that my extensive DDD in the lower lumbar area is so intense (difficult to interpret). You are right: the radiologist said that my chances of my hip collapsing are 3% in 10 years (? from memory).

I will try to get an opinion from a rheumatogist and it dawned up me that since Dr. Regan is trained as an orthopedic surgeon and has experience w/those with poor bone densities, that he might be a good resource too on what to take to grow bone, in case I go for a fusion. Also, he could inform me, hopefully, something I read that Forteo, etc. grow bone, but not of optimal density.

I appreciate your time. If only they had a way to get the lumbar spine "wired" in terms of getting the exact bone density measurements.

I hope that you are feeling better.

Btw, will you adopt me? I need heavy mothering. I know that you have the energy, time, and inclination for this.

ans

P.S. I sure would like to know that if my bone density values increase from these meds, if it'll be "strong bone" and if I"ll be a candidate for (oooh, can't wait) for fusion.

[Maria]

Re more spine surgery and my then hip values was " you should be more concerned about a hip fracture than having surgery on your back again"... of course he didn't believe in back surgery as a cure for back pain in general and I was rather living proof of his beliefs...

I think speaking with Dr.Regan would be advisable. He would likely be able to answer your questions...or at least help point you in the right direction with further research on your concerns.

re adopting you.. hmmm... once again I think there are many far more qualified actual mommies on board here ~ remember I only have experience being a *mom* figure to some felines who rule me and a dog who probably does as well

[ans]

Ahh Maria, you'd keep me in the closet with a flea collar on! I can't win.

Here's something interesting - uh, to me:

Saw my endodontist today who saved a crown with a root canal. It cost but he's a very mellow, super-smart guy. I spoke with him about Forteo and he said that he and his colleagues rarely see it. I asked him why the jaw necrosis and he hypothesized b/c when he does extractions, the putrification from necrosis is plain to see (uh, smell too). He guessed that maybe other professions don't "go" in there e.g. with punch biopsies in other places.

The doc said that it's hypothesized, from his readings, that the bone produced lacks vascular flow of blood/nutrients. Think: so maybe this stuff just makes stiff brittle bone. The lattice work in our bones are remarkable and Annapurna can testify that various lattices are strong - or so I think.

So I'm waiting for a phone call from Dr. Regan to set up a new MRI and to speak with him about Forteo. I might have burned bridges by saying to his NP that I wish I were informed ASAP that I had osteoporosis but so it goes. I have yet to hear from them and my natural paranoia wonders if they consider me to be a PITA. Heck, just asking questions and paying for wisdom.

The endodontist encouraged me to speak to a bone physiologist. Now how in the world does one find one of these folks?!

He's a surfer dude, brilliant, and a runner/big time. He complains about sciatica, has not had a flexion x-rays, nor MRI. I said, "dude, you don't want to end up like me and running's hard on the spine". Then I said, "who listens to advice?" and we both cracked up. I suggested swimming instead and I actually think he thought of it; hope so. W/a bad back, he couldn't lean over and there would go his hard-bought, lucrative practice. Really nice guy.

Be well, ans

P.S. Barbara, I will consider Actonel and more power to you in growing bone.

[ans]

I got a call from Dr. Regan's asst. and am scheduled for an MRI. I jumped to conclusions that I was "dropped" for which I apologize.