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Re: Osteoporosis diagnosis, where does this leave me?

Posted: Sun Jan 13, 2008 12:53 pm
by DonFL (imported)
Im going for my 1st bone scan in 6 years, before chems i was too dense, hopefully that has minimized any bone loss from the chemical castration. Since i didn't take any calcium supplements 90% of the time, is a worry...

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Sun Jan 13, 2008 1:57 pm
by mrt (imported)
Danya (imported) wrote: Sat Jan 12, 2008 7:37 pm I'm really worn out tonight so this may not come out as clearly written as other posts. OTOH, maybe it's just wishful thinking that my other posts are generally clear! :D

I don't want to wait until the morning to update you on my appointment this morning.

As many of you know, one measure or bone density is the T score. Values at or below -2.5 are considered indicative of osteoporosis. My lowest T score, for an area of my right hip, is -3.2. Only one of the four measured was as 'good' as -2.5.

Tomorrow morning, I'll start the once a week dosage of Actonel. This is one of the bisphosphonate class of drugs approved for treating males with osteoporosis. With insurance, my copay for this came to $90 for a one month supply of 4 tablets. Despite the really steep price, I feel fortunate. I have no idea how people with no insurance and/or less money can afford proper medical care. Truth is, they can't. That's one of the great injustices of life in the US. Even my pharamacist has unkind comments for the profits of the pharmaceutical companies.

As it is for me, a pretty hefty chunk of my monthly salary goes for drugs. I don't like it and it would be nice to have some of the money to spend on other things. At least for the time being, though, I'm able to pay for the meds. A lot of people aren't nearly as fortunate.

I'll be making changes to my diet, including eating more leafy green veggies, downing more milk, drastically reducing my caffeine intake, etc. While I've been exercising more or less regularly, I now need to make sure I exercise on a very regular routine that I skip only if I'm ill. I'll be taking a calcium supplement to make up the difference between what I get from milk, other dairy products and veggies and the 1500 mg/day my doc says I should be getting. I want to be careful to get enough calcium. Too much of the supplement, though, can cause kidney stones. I'll err on the side of kidney stones, though, if I'm in doubt :). There will be other changes, too.

In one year, we'll redo the bone density scan. I'm optomistic that these lifestyle changes, combined with the drug therpay, will result in a large improvement in bone density.

BTW, my doctor never suggested I stopped taking Androcur. He fully accepts where I'm at with being transgendered.

I want to thank all of you for taking the time to provide lots of useful information and emotional support. It helped me get through a difficult week.

-todd

I've been trying to understand health insurance and its a complex riddle. My current plan pays a percentage of drug costs so shopping around is now a plus. I don't suggest going overseas myself unless your REALLY sure your dealing with a legit company. 60 minutes had a great piece on these scum bags making tablets from Sheet rock and going to great lengths to counterfit drug bottles, labels etc to the point that some pharmacies were tricked! Labs testing this stuff were finding everything BUT the drug...

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Mon Jan 14, 2008 12:21 am
by Danya (imported)
Hey MrT,

I suspect that Actonel may not be on my insurance plan's list of fomulary (i.e., preferred) drugs. One of the other's in this class of drugs may be much less expensive.

I'm not sure that the little info I've read on these is accurate, but there's some thought that Actonel may be faster-acting than the others. I'm going to check into this more. If there's really no preferred reason to use Actonel and I can get one of the other's for less, I'll get a new prescription.

I appreciate your advice, as always. I don't think sheet rock would be of much use but its taste might not be any worse than some of the other stuff I take :-)

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Wed Jan 16, 2008 6:50 pm
by bobbie (imported)
If you are not confused enough by now here is some more confusing and confounding other studies. Found these links today.

http://www.webmd.com/heart-disease/news ... RSS_PUBLIC

http://men.webmd.com/news/20080115/low- ... RSS_PUBLIC

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Thu Jan 17, 2008 10:39 am
by mrt (imported)
Well at last a topic I know a little about. You have to be very proactive in learning what is on the formualry and what is not. Get on the web and go to your medical insurance page and see what drugs of that type are. You will then have to bug your doctor to change the prescription (Been there!) and you may find them asking YOU if you have a preference. This is when reading about all your options is a plus. I had some problems with BP meds being off formulary and DAMN expensive then finding that one I was on gave me awful side effects.

If you pay a copay thats about all you need to do. If you pay a percentage then you should shop. I hate to say it but big box stores like Sam's Club and Costco can save you a lot of money if your paying 20% for formualry drugs if they are not just the Generic stuff.
Danya (imported) wrote: Mon Jan 14, 2008 12:21 am Hey MrT,

I suspect that Actonel may not be on my insurance plan's list of fomulary (i.e., preferred) drugs. One of the other's in this class of drugs may be much less expensive.

I'm not sure that the little info I've read on these is accurate, but there's some thought that Actonel may be faster-acting than the others. I'm going to check into this more. If there's really no preferred reason to use Actonel and I can get one of the other's for less, I'll get a new prescription.

I appreciate your advice, as always. I don't think sheet rock would be of much use but its taste might not be any worse than some of the other stuff I take :-)

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Thu Jan 17, 2008 5:40 pm
by Danya (imported)
I agree, MrT. I will go to the insurance web site to see what they consider the fomularly osteoporosis drug in this class to be. It's likely my doctor won't object to switching to one of the others in this class unless he has a really good reason. I'll be glad to listen to that if he does. I still suspect he'd agree to switching to a different one if I explain how costly Actonel is. This isn't even the least expensive co-pay i've got. I'm paying $150/month for another drug! I need to shop around for that one, too.

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Thu Jan 17, 2008 6:01 pm
by Danya (imported)
Monday, I started coming down with a cold. When that happens, my asthma usually kicks in, too, and this time is no exception. So, I'm back on the bone demineralizing prednisone (actually this time the doctor's trying an analog, methly prednisilone, that's supposed to be less likely to kick off another problem - hypomania!) :-)

-vanya

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Fri Jan 18, 2008 10:35 pm
by Danya (imported)
I found out today that my blood level of vitamin D is only about 1/3 of the minimum considered essential for proper body functioning. It's necessary for the proper absoption of calcium. Now I've been prescribed a once a week vitamin D supplement to take for the next year. I naively asked the nurse if taking vitamin D enriched calcium supplements while on the prescription might mean I'd get too much of it. At that point, I had no idea how low my level was.

I'm losing count of the number of prescriptions I take. This stuff better work or I'll want my money back :-)

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Mon Jan 21, 2008 3:32 pm
by bobbie (imported)
I question the need for a prescription for vitamin D.

Think just about any multivitamin would have 100% of vitamin D needed per day. If you take a calcium supplement it always comes with additional vitamin D. Just being out in the sun you body makes vitamin D. Unless I am missing something you should have enough D already in your system. If already taking multivitamins and calcium supplements then a reason for the low uptake of vitamin D should be looked into I would think. But then again I am no doctor.

Re: Osteoporosis diagnosis, where does this leave me?

Posted: Mon Jan 21, 2008 4:16 pm
by Danya (imported)
Hi Bobbie,

I've used a multivitamin but that hasn't been sufficient. The vitamin D in calcium supplements also isn't nearly enough to make up for the shortfall I've got.

Also, as you know, there's very little sun available here in the Upper Midwest in winter, even on days when the sun is shining.

The blood test gives the true picture that I don't have nearly enough vitamin D. It's possible this is a genetic problem.

I've heard stories that many doctors are starting to think the risks of exposure to the sun (i.e., skin cancer) are far outweighed by the benefits of vitamin D production. I may have to get more of a sun tan this year! :-)