New supplement?

Eliza970
on 1/29/19 12:17 pm

My osteopenia "buddy" asked me if I have heard about a new supplement, pyrroloquinoline quinone (PPQ). It's found in some of the same foods as vitamin K. It's avalable in softgels as well as water soluble pills, so it might or might not be especially good for DS. But in the last two years publications in reputable journals have found it may have effects in bone, brain, and heart health. I figure as long as I have this pile of supplements, what's one more? It adds another $12 to the monthly cost of supplements. She takes 20 mg, brand is Nutricost (but there are at least a dozen manufacturers and a wide range of doses). She advises to only take it in the morning because it has a stimulant effect, which is one of the reasons it improves cognition. Has any one ever heard of this?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6329928/

Janet P.
on 1/30/19 6:42 am

Nope, haven't heard of it. Softgels won't work. I take K1 & K2 but unfortunately I have full blown osteoporosis (I'm almost 16 years post-op DS). I did two Reclast infusions several years ago that unfortunately didn't work (numbers didn't go up, but they didn't go down). Just met with my internist yesterday and we're going to try Prolia.

Good luck.

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

Eliza970
on 1/30/19 6:50 am

I am 13 years out and have osteopenia, but menopause and age set me up for that, as well as DS. Prolia was recommended but my insurance doesn't cover it. Let me know how well Prolia works. Hope it helps.

Noodle65
on 1/31/19 6:39 pm
DS on 10/18/12

I am six years out from ds, 53 year old post menopausal Acute Myloid Leukemia survivor with severe Osteoporosis.

I had a wrist fracture last spring. Interestingly, my pth and calcium were always in the normal range.

I am on Fortero and have a follow up dexi in may. My endo is expecting up to a 20% improvement.

I will share my results

Blessings

Julie

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