Best treatment for Osteoporosis and the DS

I had a bone density scan earlier this year and it shows that I went from Osteopenia to Osteoporosis and will need to be on a medication for it. When I had my knee surgery 2 weeks ago the surgeon also commented that it was significant.  I've tried 2 different types of the Fosamax medication (a weekly and a monthly pill) but they have both given me flu like symptoms.  I'll be seeing a specialist in the next few weeks and was wondering if there was a certain drug that works better for us that has the DS?  Any other suggestions would be greatly appreciated.

Thank you,

Ruby

Oh, where is Julie when we need her?  I don't think there is an exact recipe.  You'll be wanting to try combining different types of calcium and I also recommend trying patches in the mix along with oral meds.  You'll also want to make sure your D is in check.  When have you last had a lab panel done?

no results yet, but I just completed my 11th mth of Forteo. Will have scan in Sept to see if there is any improvement and if I will continue the next 12 mth treatment

The answer is try everything.  I know of one person *****versed her osteoporosis by using a mix of citrate, carbonate, and apatite.  Apatite has long been the calcium of choice for the DS docs in Europe.  It is available here as bone meal or Bone Up.  The generic bone meal is usually less expensive.  I have been taking all three of these calciums forever.  And I have no issues.  I recently had some dental work done and I was told I had more bone than lots of 30yo's.

If I was diagnosed I would do the three calciums, and add the patch for D too.  You have to make sure to get enough D and magnesium to process the calcium.  Otherwise you are just sending the minerals you need down the poop chute.  And add more weight bearing exercise!  This makes the body realize it NEEDS to make more bone!

I was on Fosamax for a year and the bone loss stopped but I wasn't crazy about the wonky things it did to my labs at the time.  Various labs went in the wrong direction, I remember PTH rose and vitamin D dropped. Anyway, I stopped taking Fosamax after a year and went all out with the supplements, not that I was a slouch before.  
I'm on a full dose of estrogen and testosterone combo pill that I break in half to try to absorb more easily, 50,000 IUs of dry vitamin D3, 3,600 mg of calcium citrate only from Vitalady (6 doses of 600 mg a day), dry magnesium citrate with each dose of calcium, 3mg of boron with each dose, and 2 doses of 300 mcg vitamin K2. I also walk and do leaning push-ups. The other things I could do better is drop coffee and diet Coke.
So, I had osteopenia as a pre-op and dipped into osteoporosis post-op. I've improved the percentages a bit but still just into the osteoporosis range.
I've heard good things about Forteo, which is an injection but you still get the flu-like symptoms for a couple of weeks or so. Good luck, please keep us posted.

--gina 

My PCP and Hemo agreed on Reclast infusions.  They have been OK, but from what I've read, they only coat the bone with a thin layer of calcium, and don't really do anything to harden the bone.  That comes from good quality calcim-magnesium supplements

I use UpCalD.  It's a microcrystalline powder in a packet that you mix into food, or just dump into your mouth and swallow with a drink.  Not bad tasting or chalky at all, and dissolves quickly.

Thank you for all your replies, I go to my PCP on Monday and will talk with him about more options.  I think he will refer me to a endocrinologist though.  Would I be better with a hematologist?  I have one of those.  

I am due for labs this month, last year my D was good.  I'm sure I'll be backtracking and adding more calcium, currently I am taking Vitalady calcium, boron and magnesium 4 times daily.  I also take the 50,000 of D daily and add an additional pill every other day.  I'll order some of those different calciums and try those also.  I didn't know there was different ones out there.  

Major Mom, do you have to worry about the hormones you take?  I've always been told not to take any due to cancer that runs in the family.  I'm sure that would help with the osteoporosis.  

Thanks again for all your help,

Ruby

I've had a hysterectomy so I don't have to take progesterone any more. Normally, if you have all your parts, you should take estrogen, testosterone and progesterone. My GYN says in the old days they didn't know to prescribe progesterone and that was what made the cancer occurrences rise. So far so good and I'm not worried.

--gina 

Sounds like you have a good plan, I'll talk with my GYN when I go this fall.  I use prescription creams but that is all for now.  

Ruby