Osteoporosis Damn It!

I had a Dexa Scan a few weeks ago as a follow up to the one I had last year and while I haven't seen the results yet, this is what my doctor said
"You have had some progressive bone thinning and both your hip and back are now in the osteoporosis range. We need to discuss additional work-up and treatment options."
I know what some others have dealt with this.  What is my best course of action?

I am sorry to hear this and this is one area that really scares me.  2 years ago, my levels were perfect and then in Sept 2011, I had the beginnings of Osteopenia in both my hip and wrist but spine was low normal - she said the spine may not be accurate because when you have alot of arthritis, the machines reads the calcium deposits in the joints as bone making it tough to diagnose people with severe osteoarthritis in the hip and spine.  This is why she did my wrist since I have no arthritis there.  Well, that was in Sept and I had also had an xray of my hip since I had so much pain but it came back normal - no arthritis.  About 2 weeks ags, I saw a new rheumotologist for what I thought was gout and he took xrays and examined me.  I now have severe osteoarthritis in my hips and also in my toes, not sure if gout, might just be osteoarthitis.  He also mentioned the possibility of it being psoriatic arthritis which I have to talk to him further in a few weeks.

Well, my point is if my arthritis has progressed this fast in my hip, I am afraid that maybe my osteopenia has progressed further - I am scared that I may have osteoporosis or close to it. I have been on and off my calcium so much the last 6 months between the prerequisites for my kidney stone surgeries and all the antibiotics that interfer with calcium and iron.  This is probably what caused my problem

I see my Endocrinologist tomorrow to talk about this but I do know that when we talked in the fall when I got my last tests back, she said that when it is time, she will put me on Reclast - a once per year IV - takes 20 minutes and you are set until the next year.  You can take it for 5 years, so you have to pick the proper 5 years for optimal results, so thus far she didnt' want to treat me yet but I really want to re-explore this with her tomorrow.  Things are changing quickly in my body and not sure why

good luck and look into the Reclast  You dont' want any of the pills - fosamax or boniva since they can cause severe reflux and ulcers - you have to take the pill and stay upright for 1 hour with no other food or drinks.   can still really irritate the esophagua.  My mom used Mycalcytracin - I think it was called, it was a nasal spray but it didnt' work very well.  You have to have totally clear sinus passages, no colds etc and just not as strong as the others.  I have heard that boniva came up with a weekly injection but I would still prefer a once per year IV

I don't know that mine is best but I'll list what I did. (I'm on a break from Fosamax this year) If you can talk your docs into Forteo, I've seen DSrs get great results from that, not so much the other oral treatments and I'm not even sure about Reclast. Anyway, here's what I'm doing and since you are a super malabsorber, I don't think it's too much for you either.

Hormone replacements for estrogen, progesterone and testosterone until my hysti, then a combo pill of estrogen and testosterone.
Fosamax once a week. This only stopped the bone loss, hasn't added any back.
Vitalady's: Calcium Citrate Only 3,600 mg a day in 6 - 600 mg doses, 1 capsule of magnesium citrate with each calcium dose, 1 tablet of boron with each calcium dose, 50,000 IUs of dry D3 every night and 100,000 IUs M,W, & F with my morning batch of vites, and finally 300 mcg of vitamin K2 (MK7) with morning and evening batches.

Labs I have tested every 6 months related to bones: calcium, D3, PTH and osteocalcin. Dexa scan every year since osteoporosis diagnosis. Insurance should pay for 1 a year once you're diagnosed and on an osteoporosis drug.

I also tan once a week to help the D3 and I walk and do leaning push-ups...not as much as I should though.

--g

How long have you been doing this?  Has it improved things?  When were you diagnosed?
I found a place that sells calcium citrate powder in bulk, very inexpensive.  I am thinking of buying this and adding it to my shakes every day, along with the other things.  I will have to check the prices to see where I could buy them at a good price, maybe a buy one get one sale.  My D is pretty good, although it did go down with my last check so I have been upping that.  I already take magnesium oxide twice a day.  Is the magnesium citrate in addition to this?
I have to wait until I get paid before I can do these things so I will check around while I wait.
No problem getting the Dexa Scan.  I had one last year so I am sure my doctor will want me to have it every year.  I am pretty sure my doctor will go along with labs every six months to check those levels, too.

I've been doing it for 3 years. My labs are great but I still have mild osteoporosis. I'll have my first dexa scan this spring since stopping the Fosamax. I had osteopenia at age 52 pre-op. Osteoporosis about 18 months post-op.

Make sure you're getting elemental calcium citrate. The magnesium citrate is in addition to magnesium oxide. If you start Fosamax it will make your D3 dive so make sure you're up around 100.

--g


Osteoporosis group for WLS folks: http://health.groups.yahoo.com/group/ossg-osteoporosis/

This is what's confusing.  The calcium I take now is supposed to be 500 but then I found out it is only about 145 elemental.  It is the exact same as what I got from Vitalady, the cal-mag-D3.  I figured she would sell the kind we need.  So of course I bought like 5 of them when I found a good deal.  With what you are saying I need to take at least 3 to get 450 and I would have to do that about 7 times a day, so 21 pills in one day.  That will kill off the rest of my supply quick.  What kind of calcium is 500 elemental calcium?  I see Vitalady has one that is 300 elemental so that would be 12 a day.  I wish there was some way to get a calcium citrate infusion.  I will be taking calcium every few hours at this rate.
I wouldn't mind the chews at 500 each if it is the right kind but I can see that would add up pretty quick, too.

I take her 300mg elemental capsules (2 caps each dose) and don't have constipation issues with them. Folks that have tried tablets and the calcium salts seem to have more trouble. Yeah, I take them in my morning batch, a dose every hour until right after lunch, and another dose in the evening at dinner. I take my iron in the afternoon away from all that calcium.

Citrical Maximum gives you 630 mg per 2 cap serving. I take 8 per day (4 doses). Quite a few store brands produce Citrical clones for cheaper. I get mine on Amazon.com subscribe and save program for about $11-12 per 180 capsules (price floats), which always beats even big box store prices.

Because it's a pressed pill, not a capsule, your body has to dissolve it first. I've tested these in water to see how fast they dissolve. They start dissolving right away and they are complete powder in 10 minutes. I do this with all my pressed pill supplements to see how well they dissolve.

I didn't realize you were not getting enough calcium. :(

alot of people dont realize that vitalady's calcium is only 145mg of elemental calcium - I once mentioned to her that should label it better because alot of people are under dosing.

Citical maximums are 630mg of elemental calcium for 2 tablets - you take 2 tablets 3 times per day for 1890 mg and if you want more, you can add a 4th dose for another 630mg will bring it up to 2520mg.

then there are the bariatric advantage lozenges that are 500mg each and they taste pretty good  - I love the cherry ones - take them 4 times per day for 2000mg or mix them up

magnesium oxide is for constipation and magnesium citrate (tablets) is to help you absorb your calcium, magnesium citrate liquid is for bowel clense

I'm sorry Tazz.

First thing I'd do is ask for the numbers, the T and Z scores so I could see for myself exactly where I am versus last year and how I compare to other women in my age group.

I had a 20% bone loss in the 2 year period immediately after surgery and since then I've been on a mission to educate myself on what it means for my future and what I should do about it. I'm not in osteoporosis territory. Technically I'm still within range for my age group. I just had some seriously sturdy bones when I was carrying 250 pounds on them.

Still, my Dr. tried to get me to take Fosamax. I said no. Everybody has to make their own well-researched decision on taking bisphosphonates and that very well may be your best and only option. But don't just take that script and start swallowing (or pumping into your veins) without knowing everything you possibly can on the subject.

For me, the following  are my reasons for choosing not to take them at this time:
1. I'm still in normal range for my age, despite the rapid loss
2. They haven't been around long enough to know the real long term effects (and I'm below the age range they've even been tested on.)
3. The newer data that they cause bone to be replaced with a more brittle form of bone (hence the increase in femur fractures).
4. The risk of osteonecrosis of the jaw (no thank you!).
5. The fact that they treat osteoporosis in Japan with 45mg of Vitamin K-2 (mk-4 variety) with the virtually the same success rate of bisphosphonates.
6. The definition of osteoporosis used to be a fracture. It's only been defined by DEXA scan results for about the same time they've had drugs to treat it. GREAT business for Big Pharma and their new panacea to cure what is not a disease, but a natural part of the aging process. (Naturally, with our poor absorption, we're not the same as the normal population so this one doesn't really apply.)
7. The real worry is hip fracture because that is the debilitating one that can end your life. The biggest factor in determining whether you will break a hip is falling down, not whether you didn't take bisphosphonates.

Research Vitamin K2. There is a correlation between women with lower rates of osteoporosis and prefectures of Japan where natto is a commonly eaten food (nasty fermented soybean stuff). Natto is loaded with Vitamin K2 (MK-7).  (You can find this on google or in the book I've listed below.)

Additionally, there are the studies on K2 (MK-4) from Japan showing 45 mg a day is as effective as our bisphosphonates and it is prescribed for osteoporosis in Japan the way we prescribe bisphosphonates, but with none of the nasty side effects.

The main reason they use MK-4 as a prescription for osteoporosis, as opposed to MK-7, appears to be that MK-7 is naturally occurring in natto, while MK-4 must be manufactured. You know how drug companies HATE naturally forming compounds. I have no proof on that claim, however so all I can really say is MK-4 is the one clinically tested and that is marketed and sold as a prescription treatment for osteoporosis in Japan.

Books I've enjoyed on the subject include:
 - Vitamin K2 and the Calcium Paradox: How a Little Known Vitamin Could Save Your Life by Kate Rheaume-Bleue. It's an interesting compilation of research on K2 and how it controls calcium uptake.
- The Myth of Osteoporosis by Gillian Sanson. She makes no claims that osteoporosis does not exist, so the title is a bit of a misnomer. It's really a detailed discussion of the history of osteoporosis, how the guidelines for diagnosing it have changed as drugs to treat it have become available, and most interestingly, some breakdown on what it really means to decrease your risk of fracture by use of bisphosphonates.

For example: in one published study for Fosamax I just googled, the absolute risk reduction was 1.2% fewer hip fractures over 4 years in women with severe osteoporosis (2.2% fractures in the placebo group and 1% in the Fosamax group).  Therefore the approx. number of patients needed to treat (NNT) for 4 years to prevent 1 hip fracture is (100 / 1.2) = 83 (actual NNT = 81). "  The point: 81 people had to take Fosamax to prevent 1 of them from breaking their hip, that means 80 women took the risk unnecessarily. The drug did nothing for them. They'd not have fractured anyway.

As I said, don't take my, or any one else's word for it. Do your homework. It's a scary thing and we're in a strange group of people who may or may not be comparable to the rest of the population. Bisphosphonates may be your only option, and if your age is right and your bone loss severe enough, your only realistic option.

Keep us posted on what you find out.

Edited to add: My mother has osteoporosis (5'9" and life long anorexic, alcoholic). She broke her hip at 69. She took Fosamax for 4 years (prior to the break) before her jaw began to ache and her dr took her off it. She still has osteoporosis. She's now 78.  She hasn't fallen down since her break.