Vitamin D Deficiency

Slinky wrote:Mindy, the best online osteoporosis support forum I've found is at:

http://www.healthboards.com/boards/foru ... y.php?f=96

It is FRUSTRATING tho. If you think apneasupport forum is restrictive, HA! They are a free-for-all compared to the posting restrictions at the above forum. Despite their restrictions I really have found it to be the best osteoporosis support forum.

Lots of info there on Forteo and Strontium Ranelate, as well as the usual bisphosphonates, "natural" remedies, exercise, vibration therapy, etc.

Though it's not a forum, I found this site interesting

http://www.betterbones.com/index.htm

She has a chart that lists vitamin D and other vitamins for osteoporosis.

The reason Forteo is not used much is that it costs upward of $750/month without health insurance. I'm impressed with your progress, Slinky.

Aren't drug prices amazing! I was behind a couple in the pharmacy who were flabbergasted when they got their new prescription (for his cancer treatment) and the bill was $1800.

Although Forteo has been around for a few years, it takes time for newer drugs to be used by the "average" doc. In addition, there are still docs who think osteoporosis is not a "disease" and don't realize how important it is to treat it. Kind of reminds me of a lot of attitudes toward sleep apnea!

Mindy

My gyn/ob first suggested Forteo to me. But at the time I had just started taking an immuno-suppressant for my Crohn's disease the week before and I declined but didn't rule it out in the future once I had an idea of how I was doing w/the Imuran.

I explored the Forteo option w/an Endo at Mayo while I was there but again was a little leery because of less than 6 months on Forteo. When I was finally comfortable w/the Imuran and what it was doing for me and my Crohn's I saw a local Endo and we explored and agreed upon Forteo.

When I got my first year's results back I was excited and talked to my gyn about it. He had pretty much lost interest in it. Most of his patients he'd broached the subject of Forteo w/were immediately turned off by having to give themselves a daily injection. I haven't been able to encourage him since. I've even offered to talk to any of his patients he feels would benefit from it and show them my results, talk to them about how easy and painless the injection. He's just not interested. *sigh*

Luckily my t-score is normal so at this point, at least, I don't personally need to worry about it but I would certainly rather give myself injections rather than have multiple vertebral fractures. I've worked on several studies of quality of life with hip and vertebral fracture and it's not good.

Good for you, Slinky for having, imho, a careful but also proactive attitude to treatment!

Mindy

Well, I try, but that was a whole lot easier than this bi-level bit!!! I'm just grasping it as well as I should and really do need to find a sleep doctor who understands this stuff himself well enough to guide me w/the downloads. Heck, I've done all the work for him: I have the fully data capable Resmed VPAP Auto, I have the S8 ResLink, I have the Embla XPod oximeter & sensor, I have the ResScan 3.4 software and cable reader. I can provide the print out of the data - and the current sleep doc doesn't even understand what he's looking at WHEN I can get him to REALLY look at it!! So, I'm interviewing another one next week. If he doesn't know his profession any better then I just sit tight until I get to Mayo for the surgeries in October, I guess (NO - not surgeries for OSA!!! I may be dumb, but I'm not STUPID! - shut up, SnoreDog )

Slinky,

Sorry to hear you're going to have surgeries but happy to hear you're going to Mayo - they seem to be one of the few really good places to go (at least last I heard).

Finding a doc who understands your vpap sounds like a real challenge! In my view most docs are technicians, and there are some really good ones out there (and some not so good). When they learn the diagnosis and treatment part, it's about what's available when they are in training and a lot depends on who is training them. Once they are in practice, imho, even though some try to keep up with the literature, most don't have enough time to focus on all of the things they really should be learning and so they end up partly depending on pharma and medical equipment company reps for information. Even if they faithfully read the journals, that doesn't make them specialists in understanding the theories behind the equipment.

I don't find it at all surprising that many don't understand all the ins and outs of the equipment. What they have time to learn is (hopefully) deciding what the problem is and what type of equipment to prescrbe. That in no way means they know how to interpret the output!!! Sad but true and a reality of our health care system more than any individual doc, imho.

Mindy

If they would just loosen the darn reins on the RPSGTs and let them consult w/the patient and look over the downloaded data .... patients and doctors would both be better off!! At least the RPSGTs understand the data!!! Doctors use PAs, and NPs, why not make the most of the expertise of the RPSGTs?

Slinky wrote:If they would just loosen the darn reins on the RPSGTs and let them consult w/the patient and look over the downloaded data .... patients and doctors would both be better off!! At least the RPSGTs understand the data!!! Doctors use PAs, and NPs, why not make the most of the expertise of the RPSGTs?

Yup! Right on --- there are a lot of control freaks in this world!

m

Slinky wrote:My gyn/ob first suggested Forteo to me. But at the time I had just started taking an immuno-suppressant for my Crohn's disease the week before and I declined but didn't rule it out in the future once I had an idea of how I was doing w/the Imuran.

I explored the Forteo option w/an Endo at Mayo while I was there but again was a little leery because of less than 6 months on Forteo. When I was finally comfortable w/the Imuran and what it was doing for me and my Crohn's I saw a local Endo and we explored and agreed upon Forteo.

When I got my first year's results back I was excited and talked to my gyn about it. He had pretty much lost interest in it. Most of his patients he'd broached the subject of Forteo w/were immediately turned off by having to give themselves a daily injection. I haven't been able to encourage him since. I've even offered to talk to any of his patients he feels would benefit from it and show them my results, talk to them about how easy and painless the injection. He's just not interested. *sigh*

I was the first one any of my doctors had on Forteo. They didn't know much about it really. I just did all the research myself and felt satisfied. The daily injection is nothing.

you people are all falling apart!

http://www.newsday.com/news/opinion/ny- ... 6393.blurb

hey Slink, I looked over your x-rays you sent .....well me thinks you need to cut back on the calcium a wee bit, looks like kidney stones or somethin:



but your x-rays look better than Dick Cheney's bird hunting buddy:

Those aren't kidney stones, SnoreDog!!! They are Pearls of Wisdom I've misplaced! Thanks for finding them for me!!