How to best prevent bone loss?

[Settledownnow]

Are there any stats on the rate of osteopenia and osteoporosis among DSers compared with non-DSers? Do most long term DSers have bone loss and/or osteopenia/osteoporosis?

I am trying to get an understanding of bone loss, calcium, and other supplements. From postings I have read (not that these are accurate) it seems that bone loss is possible despite compliance with supplements.

I know Vitalady's schedule includes 1800 mg of elemental calcium daily, but I am seeing people write that they take 3-5 grams of calcium daily. I do understand there is a relationship between calcium, D, magnesium, K2, and boron (anything else? copper?) and it is important to also include these supplements in the schedule. I'm wondering if powdered (elemental) or liquid (elemental) calcium is better absorbed by DSers than the compressed calcium horse pills?

Is the answer to preventing bone loss to take your supplements, monitor and adjust according to your labs, get regular dexa scans, and cross your fingers for good genes and good luck?

How often should DSers get a Dexa?

 

[aaa]

My Doctors have me take a Dexa yearly. I do have osteoporosis that began as osteopenia.

I've never missed a day of vits/minerals, so my compliance hasn't factored into it. I take over 4000 mg/day of calcium citrate and 100k of D3. My numbers were good in July 2015 but I'm doing them again this week in preparation for my 3rd annual Reclast infusion. I'm seeing my bone specialist in a couple of weeks so I don't know how she feels about my latest Dexa results. Some things look a bit better but two are a bit worse. She'll have to interpret it for me.

The reason many doctors like Reclast for DSers is they don't have to worry about malabsorption issues.

I also lift weights (when I don't have hernias) which is supposed to help.

Unfortunately, I don't have an answer for you regarding DSer stats and bone issues. Perhaps some else will have more info. on that.

 

[DSRIGGS]

I saw an infomercial... From afar.... But they were selling a protein supplement that is supposedly growing bone in users. I didn't catch the name so I haven't been able to research and check validity (all know those shows usually sell snake oil) but it sounded promising.

 

[southernlady]

But they were selling a protein supplement that is supposedly growing bone in users.

Does sound like snake oil...HOWEVER, there is one medication that does grow bone versus just stopping the current loss.
Forteo:

Teriparatide Parathyroid Hormone (PTH) (1-34) (Forteo®)
Teriparatide, a type of parathyroid hormone, is approved for the treatment of osteoporosis in postmenopausal women and in men who are at high risk of breaking a broken bone. It is also approved for the treatment of osteoporosis in men and women who are at high risk of breaking a bone as a result of taking steroid medicines for a long time. This medicine rebuilds bone and significantly increases bone mineral density, especially in the spine.

In clinical studies of postmenopausal women using teriparatide, fractures were reduced in the spine and throughout the skeleton. In men, bone density increased, but the study was too small and not long enough to determine whether fractures decreased.

Good candidates for teriparatide include those who have had an osteoporosis related fracture and those with very low bone density (T-scores lower than -3.0). Teriparatide is also an option for patients who continue to lose bone density or break a bone during treatment with other osteoporosis medicines.

Teriparatide is self-administered as a daily injection from a pre-loaded pen containing a one month supply of medicine. It can be taken for a maximum of two years. At the end of two years, to retain the benefits of treatment with teriparatide, most experts recommend that patients start an antiresorptive medicine.

Side Effects
Side effects include leg cramps and dizziness. Modest elevations in serum and urine calcium can occur, but there is no documented increase in the risk of kidney stones.

In animal studies, very high doses of teriparatide that were given for a long period of time increased the incidence of rat osteosarcoma, a type of bone cancer. Although common in rats, this type of tumor is extremely rare in adult humans. For this reason, the FDA approved its use for up to two years only. There has been no evidence of increased risk of osteosarcoma in humans taking teriparatide.

People with certain conditions should not take this medicine. This includes people with Paget’s disease, children with growing bone, persons with unexplained serum alkaline phosphatase elevations, and those who have had radiation treatment involving the skeleton. It also should not be given to people with metabolic bone diseases such as hyperparathyroidism and those with cancer that has spread to the bone. Also, people who have certain abnormal blood tests, including increased calcium levels, should not take this medicine.

It is the most expensive and insurance companies (esp Medicare) require a "failure" of other options before authorizing this one.

My Doctors have me take a Dexa yearly. I do have osteoporosis that began as osteopenia.

I'm on an every two year schedule even with full blown osteo and one Reclast infusion already. Medicare only allows one every two years.

 

[k9ophile]

I did two years of Boniva then two years of Forteo. My osteoporosis did improve. However, they are not without serious risks. I know of a few who refuse to use them due to those risks. Interestingly enough, I just read an article about how taking an aspirin a day may help. I'm going to look into that further with eyes wide open. With a DS stomach, I dread to think how much could be affected by an ulcer.

 

[aaa]

Third annual Reclast tomorrow. Dexa Bone Density scan had some ups and downs, but the bloods showed a great bone turnover. This signifies Reclast is working. If bloods look good next year, I may be able to skip a Reclast!

 

[aaa]

Third annual Reclast tomorrow. Dexa Bone Density scan had some ups and downs, but the bloods showed a great bone turnover. This signifies Reclast is working. If bloods look good next year, I may be able to skip a Reclast!

Update: As wonderful as always. Today is the first day I'm feeling not dreadful.