I have osteoperosis now

[southernlady]

Went from Osteopenia back in Oct 2011 to full blown osteoporosis.

My PCP is suggesting Prolia...looked it up, don't care for the side effects listed.

Before taking Prolia® (denosumab), tell your doctor if you:

• Take the medicine XGEVA® (denosumab).
• Have low blood calcium.
• Cannot take daily calcium and vitamin D.
• Had parathyroid or thyroid surgery (glands located in your neck).
• Have been told you have trouble absorbing minerals in your stomach or intestines (malabsorption syndrome).
• Have kidney problems or are on kidney dialysis.
• Plan to have dental surgery or teeth removed.
• Are pregnant or plan to become pregnant.
• Are breast-feeding or plan to breast-feed.

I'm thinking I need a different option here.

 

[Spiky Bugger]

Me, too. If you'd rather die from something other than having your jaw rot and fall off (bisphosphonates) there's Forteo...but I think that may be a difficult drug for us.

Let me know what you learn...I'm in the same boat...just graduated to osteoporosis...and my mom had a pretty brutal case, so it is worrisome.

 

[southernlady]

Me, too. If you'd rather die from something other than having your jaw rot and fall off (bisphosphonates) there's Forteo...but I think that may be a difficult drug for us.

Let me know what you learn...I'm in the same boat...just graduated to osteoporosis...and my mom had a pretty brutal case, so it is worrisome.

My Mother had a bad case of it as well...even had the "dowager's hump"...lost about 3 inches as well.

I am thinking he's looking at the fact that I am post menopausal.

 

[southernlady]

I'm gonna tag @MajorMom on this one...she's been successful here.

 

[Spiky Bugger]

My Mother had a bad case of it as well...even had the "dowager's hump"...lost about 3 inches as well.

I am thinking he's looking at the fact that I am post menopausal.

Yeah...I'm 37 years post-menopausal, with a hx of smoking, and no HRT, and some other risk factor...but a friend had a family member who got cancer in the jawbone and lost it completely on Fosamax, so I have met one of the"rare" cases, and its hard to remember the "rare" part.

 

[southernlady]

Yeah...I'm 37 years post-menopausal, with a hx of smoking, and no HRT, and some other risk factor...but a friend had a family member who got cancer in the jawbone and lost it completely on Fosamax, so I have met one of the"rare" cases, and its hard to remember the "rare" part.

No history of smoking (at least first hand but decades as a second hand smoker), Just in the last few years went post menopausal as they had to check with blood tests and only the last one 2 years ago gave me a final YES. But haven't gone any HRT...symptoms never bothered me.

I didn't completely fit the high risk category til after WLS...

Uncontrollable Risk Factors

• Being over age 50.
• Being female.
• Menopause.
• Family history of osteoporosis.
• Low body weight/being small and thin.
• Broken bones or height loss.

Now the controllable ones are different. The DS life doesn't lend itself to avoiding it:

Controllable Risk Factors

• Not getting enough calcium and vitamin D.
• Not eating enough fruits and vegetables.
• Getting too much protein, sodium and caffeine.
• Having an inactive lifestyle.
• Smoking.
• Drinking too much alcohol.
• Losing weight.

Sodium is not a problem and I don't drink alcohol at all. But I do NOT function well without my coffee.

The odd thing is my D is high normal (BY normie standards), my calcium is in line and my PTH was on the low side of normal.
Told dh I wanted to add K2 to the mix.

 

[huneypie]

Yes, Gina advises 600mcg of K2. Are you strontium? Boron? Magnesium citrate in a 2:1 ratio? What I should say is what are you currently doing?

 

[huneypie]

Biotech K2 MK7 that is.

 

[Bagaof4]

Aaaccchhh!!! I have so many uncontrollable factors as well! Following your lead, Liz!

 

[brooklyngirl]

Blech that sucks Liz, hope you find something that helps!

 

[k9ophile]

Me, too. If you'd rather die from something other than having your jaw rot and fall off (bisphosphonates) there's Forteo...but I think that may be a difficult drug for us.

Let me know what you learn...I'm in the same boat...just graduated to osteoporosis...and my mom had a pretty brutal case, so it is worrisome.

What have you heard about Forteo? Difficult how?

 

[Spiky Bugger]

What have you heard about Forteo? Difficult how?

Just a bunch of pt comments from sites like this...http://www.healthcentral.com/osteoporosis/c/73/2677/comments

Seems like quite a few people have an increased need for stuff we are already deficient in....

 

[aaa]

I had the Reclast Infusion last May. Have you looked into it? My endocrin. specializes in osteo. issues and consulted with others who have had DS patients [and my surgeon] and due to the malabsorption they felt it was the best.

I didn't love and it and had a very hard time with it. I will be meeting with her again within the month to discuss it and whether or not to do it again (apparently, it's supposed to be easier the 2d time around).

 

[southernlady]

I had the Reclast Infusion last May. Have you looked into it? My endocrin. specializes in osteo. issues and consulted with others who have had DS patients [and my surgeon] and due to the malabsorption they felt it was the best.

I didn't love and it and had a very hard time with it. I will be meeting with her again within the month to discuss it and whether or not to do it again (apparently, it's supposed to be easier the 2d time around).

Much of my decision will be based on what the copay will be for me. I know I need to handle this but my options may be limited in that respect. Being on a Medicare Advantage policy limits what drugs are in my formulary. Up til now, I only worried about two...both my thyroid meds.

 

[MajorMom]

I took Fosamax for about a year. (a.k.a. rat poison) The year I was on it my D dipped and my PTH rose. When we checked my osteocalcin it was below range as if there was no regeneration going on at all, much like concrete. I had no change on my dexa scans in that year. I stopped the Fosamax, started increasing the vitamin K2 to 600mcg a day, and kept with 100K D3 every other day, 50K the other days, a magnesium citrate capsule with every calcium dose, 3,600mg of calcium citrate via capsules- not tablets, a boron tablet with every calcium dose, and stayed with 2.5 Estratest hormone replacements. Last dexa scan improved to osteopenia and I need to get one this year to see if the improvement is continuing.

I would try an increase in the vitamin K2 and the other things listed above. Try it for a year and see if you can slow or stop the bone loss. If not, bring it to a screeching halt with the heavy hitters for a year and then try to come off.

Vitalady/BioTech capsule for K2, calcium citrate only, D3, magnesium citrate.