Osteoporosis Advice

[ans]

OK. The hematologist/oncologist suggested a yearly infusion of Reclast. My internist I think suggested Forteo but said that I'll have to inject myself daily. My pharmacist said that this is untrue and btw, there's a generic for Forteo (or Fosomax?) [running on no sleep]. She also said that at my age of 56, there is no such thing as bone growing.

Now I'm really confused.

Is there anything I can take that will actually grow bone and increase my bone density?

Thanks.

Oh, my femoral neck's readings were 2.5 and 2.7 standard deviations from the norm and the lumbar spine looked OK - with the caveat that my extensive DDD could make these readings look better than they are in terms of osteoporosis/osteopenia.

Any help appreciated.

Allan

[dshobbies]

Allan,

I saw this quite awhile ago and it may have been amended by now - and it may not be appropriate for someone with back issues - but, lifting free weights has been shown to increase bone density in senior citizens. I don't remember if the amount of the weight played a part but you might want to goggle this just to investigate.

I've also read that jaw degeneration side effects for osteoporosis drugs increase with longer lasting drugs. Taking shorter acting drugs, like once weekly is not a guarantee of no side effects but the percentages are lower than once a month which is lower than yearly.

Kind of hard to imagine how lay people investigated on their own before this age of computers.

Dale

[sahuaro]

Allan:
I don't understand why your pharmacist said there is no bone growth in adults--they may not get longer (you don't get taller), but bone is living tissue and there is (or should be) turnover in the cells (like skin).

I have had an increase in bone density as measured by DEXA with Actonel and calcium and vitamin D supplements and my PCP said that he has patients with greater increases than mine.

I have not done the research but I too would question the effects of a once-a-year massive dose as opposed to weekly dosage. Your numbers seem to be right on the border between osteopenia and osteoporosis--I know you can be obsessive about these things (), but maybe a consult with a rheumatologist to ask about options?

[ans]

Thanks Dale: if only I could weight-lift!

Barbara, thank you so much for your advice/information. I knew that I could count on you to figure the stats as they are not in t-scores. (Or are they? I'm dumb in stats).

I appreciate your update on bone growth! Why should I see a rheumatologist when I have you as my consult?

Hmm, so whaddy'a think would be the best treatment. Fosomax? (Now I wonder if there's truly a generic) or Actonel like yourself? I need ammunition before I see my internist who told me that w/one of these drugs I'd have to inject myself every day? He's smart and rarely wrong but I suspect this time, something's awry.

Wow, so I'm not in the pure osteoporosis range? Geeze, it's so unlike me to worry or catastrophize.

In appreciation oh science fair whiz.

Allan

[sahuaro]

Fossomax and Actonel are both in pill form; it is the Forteo that requires injection. For some reason, I re-read the patient insert for Actonel this morning and it comes in different doses for daily, weekly and twice-monthly administration. I don't know why one would be chosen over the others--but I think I would rebel against the daily dose. I am on Actonel because I was having GI problems on the Fossomax. Otherwise, I don't know if there's any advantage of one over the other. Also, from what I've gathered from other people's posts, Forteo is a different kind of medication than the biophosphanates (sp?): you take it for a couple of years and then switch to the biophosphanates.

[Maria]

ans,

Please the part particularly about oseoblasts/osteoclasts

FYI~ the injectable Forteo is not like drawing up a syringe of medication and injecting one's self intramuscularly. It's done with a pen system and a very small fine needle on a pen type of system and all you have to do is grasp a little roll of fat (like around the stomach) and subcutaneously inject the medication by pulling back on the base of the pen system (like the needle) and pushing this very slender tiny needle into the sub-q fat and then it's advised to count to five which I sometimes do or not and withdraw the needle.

To me the worse thing about this is remembering to do it daily and the smell of the medication which isn't bad just sometimes sticks with me for some reason.

While I googled this info it seemed to be correct,succinct and pertinent to the question asked. Read on...

Edit by mmglobal 3/15/013 following a copyright infringement complaint. I'm adding appropriate citing of source below.

The following information was excerpted from an article titled,
"How bones work — the nature of healthy bone" by Dr. Susan E. Brown, PhD
at The nature of healthy bone

Edit 3/19/2013, removed quoted text because of copyright infringement complaint. Mark

[sahuaro]

Excellent info, Maria. Thank you for posting this.
Collagen--interesting and makes sense.

[ans]

Thank you very much for helping me!

I remember now the bone stuff from physiology.

Spotty from another forum told me that the bone being built isn't as dense as normal bone - but as M points out, we have various bone types.

I"m going for a hip MRI pretty soon and also for my spine as the pain's getting worse, day by day.

So, can you think for me and tell me what to do? I"m not kidding!

Yeah, so the hematologist/oncologist wanted to give me a yearly infusion of Reclast. Spotty is also concerned that these drugs last for 20 years (in the bone marrow?) and we don't know much about their safety. Maybe this is regarding an infusion versus more regular doses.

Is it true that Forteo is in generic b/c I was told that it's very expensive.

Again, I appreciate this as this is a new world.

(I wonder if I was born intersexed b/c of this).

Barbara, so you are interpreting the standard deviations and putting them in light of T-scores? I'll have to ask you sometime how this is done.

Gratefully, Allan

[sahuaro]

Allan:
Osteoporosis is defined as T scores below -2.5. T scores compare your bone density to women in their 30's (yes, women); Z scores compare to women in your age range. I don't know if the interpretation of scores is adjusted for males, e.g., if, as a male, a T score of -2.5 would be interpreted as worse than the same score for a woman. Obviously, in many ways, this is a crude measure and docs don't figure in the standard error of measurement and other variables.
Since you have had previous tests, the question would be whether the change in your scores are within the standard error of measurement or beyond, i.e., is the change significant? (I don't remember the SE but I did find it online a while ago)

[Maria]

Osteoporosis and bone physiology

Allan~ I found some very interesting information on this website

[ans]

Thank you very much oh highly-educated Nurse Maazz (who could have become an MD if you chose).

I"m a weak male. Tell me what to do.

Maybe when I catch up on school, etc. I can actually think for myself.

I appreciate everyone's input.

[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.

[dshobbies]

none necessary. It was an easy conclusion to reach. Glad you were wrong. Let us know the results.

[ans]

Thanks but it's something that had to be done.

You be well. ~ ans