This is terrible, Vanyel. I'm so sorry. Have you investigated other
osteoporosis meds besides Reclast? I take Evista. I know there are several others. One is Boniva. I am just out of a cast with a broken foot, but I fell. I'm not sure how I broke my foot in that fall, but I did.
I'm a prime candidate for osteoporosis...white female, early menopause, steroids, etc. I do not take calcium since I was found to have high blood calcium one time???? I do take vitamin D. When is your next bone density test? Was there any improvement with the Fosomax. It helped me. I went from osteoporosis to osteopena while on it. I too had to stop taking it. I think I'm back to osteoporosis now.

Alabama,
Boniva is basically the same as fosamax - same drug family. Evista was denied by my insurance company as it is for women only. Reclast probably will be too. I did improve with the fosamax, but its a moot point as I can't take it anymore. Such fun and games, eh?

Vanyel

Vanyel,
It does sound like a great concern, but may I ask, why don't you want to take estrogen? Given everything you've tried, yet continue to have such serious and apparently growing complications, it seems estrogen is a wise consideration. Is your testosterone level still low with supplementation? I know I don't have to tell you, but testosterone converts into estrogen & if the former is low, so is the latter. Can you increase testosterone, (to help stimulate estrogen producton), if you are reluctant to take estrogen? Have you researched Estratest, a combo of testosterone & estrogen?

I understand the possible complications of estrogen & compounds of, esp'lly with DVT, but at a low dose and careful monitering, Estratest maybe worth looking into. There are great benefits to estrogen replacement, but of course weigh the benefits with the risks.

My skeletal system, primarily my L/S, is becoming tehtered, so I certainly understand your worries. I cannot take estrogen, or testosterone replacement, but would if I could..another UGGHH story.

I hope your foot is better?

I am male. My insurance won't pay for any estrogen. And I don't want it in me either. Ick poo girl stuff. My testosterone levels are good now with supplement. My foot is most unhappy. I wandered out to a movie tonight in the pouring rain and just that little bit of walking was really annoying. Sigh.

Are you in a walking cast? I hope so. I was put in one on a Thursday and was walking unaided Sunday. It didn't hurt too much after Sunday.
You DO NOT want to further injure your foot!!! Take care, Vanyel.

Vanyel,
"The Male" naturally produces estrogen, in the ADRENAL GLANDS. Since your testosterone levels are good, then logically (vs my non-medical knowledge) your adrenals may be inhibited, in producing other important hormones? I certianly don't want to push "Ick Poo Girl Stuff" on you, but...

Since Estratest is a testosterone compound, your ins. may cover.

Was the movie worth it???? :) :)

PS - Alabama is so right. I too fx'd my foot, a non-trauma event, refused a walking cast, bone 'healed' all screwy and now my only option is to have it re-broken, re-set & casted. Oh, I forgot to mention, I am fracture suseptible, due to lack of that Ick Poo Girl Stuff!

hello vanyel (et al!),

this is actually one area that i have had success in, believe it or not!
after being on steroid inhalers for as long as i can remember (probably from third grade until now) along with numerous prescriptions of prednisone interspersed over the years (i couldn't tell you how many if you put a gun to my head!), you can probably guess that my bones are/were a joke and a half. i had no idea *just* how bad they could even be, however, until i went to the mayo clinic (or as i like to call it, medical DISNEYWORLD) in 2005. while trying to figure out what in the hell else was wrong with me in addition to AD, they ordered a bone scan that showed that i had osteopenia.

O-S-T-E-O-P-E-N-I-A.

i thought i was going to lose it right there and then. if ever there was *anything* that was going to sink my career in musical theatre, it was that (um, hello, years of dance training - i won't be needing you anymore. blurg!). i was devastated.

my husband was, too - and decided that he would become an absolute psycho-stalker about my meds. too big to swallow? he didn't care. i was going to take them, and i was going to take them correctly. and for the last five years, this is what i've been taking:

vitamin D, 50,ooo icu 1x/weekly
vitamin D, 1,ooo mg 1x/daily

a few months back i switched to a new endocrinologist, who ordered a new bone density test THE SAME DAY i saw him. i was terrified! i thought for *sure* they were going to tell me that i had osteoporosis. bug instead the woman told me ...

I HAD REVERSED THE OSTEOPENIA COMPLETELY!

... and not only had i reversed it (and it was bad news before, believe me),
but my bones are now in the high/healthy range of where they could be for a woman my age.

shocker, right? i couldn't believe it. i asked her a million times if she was sure, until she must have certainly thought i was a nut-job. which i am, of course - but she was also right! she took a long time talking to me, and told me that i can take *far* more vitamin D in a day that i am now - i can't remember the mgs, but i think i wrote it down. she told me to consider the vitamin D chews (the chocolate ones), etc., ... apparently there are all kinds of yummy things - and even smaller pills that i'll be able to stand!

don't get me wrong - i get the WORST joint pain, and i've gained weight ... so i'd say it's fair to hedge your bets that i won't be putting my tap shoes anytime soon ... but the good news is that we CAN make some sort of difference in our bone density if we CHOW the vitamin D.

so that's my story. i realize i've mumbled on here - sorry. it just so happens that this is about the *only* good medical news i've gotten in awhile ... and that i know now that it's never too late for *anyone* !!! it might take a little while, but work at it, and things will get better, i promise. hey, we have to take the small, slow victories where we can find them, right?

hope your foot is feeling better!
xoxo, misa

ps) just curious - what is your aversion to esrogen? will the amount that the doctor wants to give you affect you in a big way? i have no idea about this, so i'm interested in knowing ...

oh, and another thing-

i think we should all band together and refuse boniva simply because of the RIDICULOUS COMMERCIALS THEY PLAY CONSTANTLY!

yes, sally field. we know. you have this *one body* and this *one life* ...
here's an idea: say it *one time* and then SHUT THE HELL UP about it!

blurg.

and maybe just *one* thing:

i am SO TIRED of CELEBRITIES pushing name-brand drugs to us now. really, brooke shields? you use latisse? i find that odd since you are almost *always* wearing fake eyelashes. i also have to wonderhow you even find the TIME while you're also pushing colgate, royal velvet, volkswagon and whatever else.

then there's bob dole, magic johnson, cal ripken ...

i don't know. it just seems like a cheap way to get your attention to remember a brand name.

bottom line?
grr, ugh, blurg.

xo, misa

Hey all,
No, my foot is not in a walking cast. They gave me a boot to wear if I want to for comfort, but really didn't restrict my use of the foot. The pain restricts it quite well enough. The fracture is not displaced so I guess they aren't too worried. I don't know. It continues to hurt a lot and keep me off it. Stupid thing.
Estrogen gives males 'female' side effects and causes all sorts of mood issues etc if men take it. It is not enjoyable, especially not for long term use. I don't want to grow boobs. I do take small dose of progesterone as we tested that and my adrenals don't make it at all either. I don't see what good it would do anyway - as someone already stated, excess testosterone is converted to estrogen, and I take extra testosterone already, so I should have more than enough estrogen for a male. Last I was tested, I did.
I take oodles of vitamin D already as well. 50,000 units 3 times a week at the moment. Along with Calcium, magnesium. I am looking to get on some vitamin K2 as well.
Interestingly, my bone scan only showed moderate osteopenia, though we already had multiple spontaneous fractures at that point so I clearly have osteoporosis. So says the doctor anyway. I don't know what the exact deal is with these bones - just like the rest of me - nothing ever comes out the way the textbook say it should and i just continue to fall apart.
Thanks for all the replies.

You should try weight training. It helps with bone density. I have personally been weight training since 2 and a half years and my health is so much better now.

Here's a link : http://www.naturalnews.com/010528.html

i am so sorry to hear about your fracture in your foot. the rib fractures concern me more as they can cause all kinds of problems internally. and although exercise does help strengthen just about everything, with fragile bones you have to be very careful to not stress them too much as cause micro fx.
as you insurance will not pay for the drugs you are considering, in other words the cost is up to you, you might want to consider some of the "natural" treatments that women use to ease menopausal symptoms. these supplements could be easily controlled by you if you found the side effects did not warrant the benefits. I beleive that there are soy estrogens and yam estrogens that are very easily assimilated and do not build up in fat tissues like prescription meds can. I do not know if that is a requirement for helping with bone density, so they may not help, but it would be worth looking into.
I do not blame you for not wanting breasts. I am developing facial hair and losing my head hair because of high doses of prednisone. It is a real downer and I cannot wait to get my girlie face back!

hey, saw 2 docs last week who want me to take "bone" medicine because of the high doses of pred I am having to use for the Behcets. I think I start treatment (immunosuppresives) for the behcets next week, but I wont be able to get off the steroids until they see if the treatments help (3 months).
one recommended actonel, one recommended atelvia. I do not think its a good idea to take either as I already have esophageal problems due to the Behcets. what did the "bone" meds do for you and why did you stop taking them?

They did help me bone wise, I have to say, but they gave me wicked awful heartburn problems that kept getting worse. Doc finally said to stop taking it because of reflux problem. They can be very hard on esophogus/GI tract. I don't want to tear that up to the point of bleeding and ulceration, so no more for me. We then went to the injectable variety - Reclast, which is an IV infusion once a year. However even though my insurance said it was approved, they did not pay for it and I'm stuck with a 2200 dollar bill. Beware. I felt it was needed as I kept breaking bones, and I hope it is being helpful in that regard. I haven't broken anything since last fall so here' hoping. They are hard on a person - these bone drugs - and can do radical things like kill your jawbone, but that is rare. YOu have to decide if the risk is worth the benefit for you. They certainly are not benign drugs. Good luck.

Vanyel