Prolea and other bone building medications

[Razbry]

I think I'm finally going to give up and take Prolea. I've done a great job reversing osteoporosis to normal in my spine over the last four years, but my hip remains at risk. BAH Does anyone have any idea how this stuff might interfere with other vit and mineral absorption? Should I keep taking my cal. and mag during this process? I have kidney stones in waiting. Does this stuff loosen those up. I must admit, I am fearful. I read a couple horror stories about kidney failure.

 

[southernlady]

No clue about Prolea. And remember, the listed side effects are there because SOMEONE reported it during the trials on the drug.

I had two Reclast infusions...last one was in Sept and I still take all my calcium and mag. I DID HOLD my calcium/mag the day of my infusion but that was it. Got right back to it when I got home.

 

[KathrynK]

I think I'm finally going to give up and take Prolea. I've done a great job reversing osteoporosis to normal in my spine over the last four years, but my hip remains at risk. BAH Does anyone have any idea how this stuff might interfere with other vit and mineral absorption? Should I keep taking my cal. and mag during this process? I have kidney stones in waiting. Does this stuff loosen those up. I must admit, I am fearful. I read a couple horror stories about kidney failure.

You can read about it searching under its generic name (denosumab) or its trade name (Prolia is the correct spelling). It's a relatively new drug administered by injection every 6 months. You have to have adequate calcium and vitamin D levels and a good PTH before you start, and magnesium levels can be affected. They want ya normies on at least 1000mg calcium per day, and 500 mg of vitamin D throughout, but since you've had WLS, you have to tell them what your baseline need is at this point. You will likely have to take a higher calcium dose. One of its side effects is low calcium levels. I can't find anything about how it affects vitamin K. Check first with your insurance, it is not always covered and costs about $1000 per dose if you are uninsured. Amgen has some co-pay programs if you have a high copay (mine is $200 because the insurer feels there are equivalent drugs that are cheaper). I was told it was going to be prescribed, but I am going to go on either estradiol or raloxifene first, because I am having dental work done. I would let your surgeons office know you are going to take it, so he/she can talk to the prescriber. There is a lot to read about it online, but (as is typical) there isn't a lot about WLS or how vitamin absorption might be affected. It is better than oral administration in that regard, I would think. Good that you are asking questions! Don't take it until you feel you have good answers.

 

[bearmom]

Ugh. So sorry you are hassling with this, and hope some that have taken it or researched it happen along.

I'll mention some stuff about kidney stones, as I'm too familiar with them as I've had them since long before my DS, and have to stay on top of them like never before.

Nothing can actually dissolve stones once they are formed, but they are finding probiotics show promise at preventing them from forming, and possibly helping break them down. They know that people with oxalobacter formigenes in their gut are 70 percent less likely to develop kidney stones than people whose dietary tracts lack that bacteria. O formigenes is believed to prevent stones by breaking down the calcium oxalate in the intestinal tract before it can ever get to the kidneys. There is no product yet that has O formigenes that we can purchase, but one that is very similar and may have the same benefit we CAN buy is "VSL3" and a prescription version which is much stronger is "VSL3-DS". I take it, and get it through Costco.

Other studies with lactic acid bacteria that included Lactobacillus acidophilus, Lactobacillusbrevis, Streptococcus thermophilus, and Bifidobacteria infantis can reduce urinary oxalate excretion by 24-40%. That almost certainly helps reduce stone formation. Some probiotics that we can purchase with these strains are Accuflora Pro-Biotic-Acidophilus from Northwest Natural and Align Digestive Care from Proctor and Gamble.

Last kidney stone thing, is make sure you don't have low citrate (need 24 hour urine test for that). We often have a combo of high oxalate and low citrate, which is a recipe for making cal/oxalate stones. You can take Uricit-K to address the low oxalate with is a prescription potassium.

I'm not sure if its the urocit-K, probiotics, or both, but I've gone from stones ever 1-2 weeks, to going 2-3 years between, and haven't had a real trouble maker that stuck or got huge in mb 5-6 years.

Since I'm paranoid about bone loss, I asked, and was told, that taking any of these things would not be detrimental as far as bone loss.

 

[Razbry]

Wow thanks for the information. Anyone else?

 

[Petunia]

I've had 3 Prolea injections and am due the 4th this month. We won't know how effective they've been until next August when I have another bone density. I've not had any side effects from them, the other drugs I tried all gave me flu like symptoms. I think part of my problem was not taking enough calcium throughout the years. I probably take double what I was taking the first 7 years.

 

[Razbry]

Yeah, if you read the literature on Prolia, it is not meant to be taken by people with shortened guts or malabsorption issues. I've got issues with Reclast. I think I'd rather risk a broken bone than lose my kidneys

 

[aaa]

Three Reclast infusions so far (over 3 years). My bloods showed my bone turnover increased and my doctor was pleased.

I'll see her in a couple of weeks and we'll see how my bone turnover is doing this year. If it's still good, I may be able to skip the Reclast this year.

 

[DSRIGGS]

Ugh. So sorry you are hassling with this, and hope some that have taken it or researched it happen along.

I'll mention some stuff about kidney stones, as I'm too familiar with them as I've had them since long before my DS, and have to stay on top of them like never before.

Nothing can actually dissolve stones once they are formed, but they are finding probiotics show promise at preventing them from forming, and possibly helping break them down. They know that people with oxalobacter formigenes in their gut are 70 percent less likely to develop kidney stones than people whose dietary tracts lack that bacteria. O formigenes is believed to prevent stones by breaking down the calcium oxalate in the intestinal tract before it can ever get to the kidneys. There is no product yet that has O formigenes that we can purchase, but one that is very similar and may have the same benefit we CAN buy is "VSL3" and a prescription version which is much stronger is "VSL3-DS". I take it, and get it through Costco.

Other studies with lactic acid bacteria that included Lactobacillus acidophilus, Lactobacillusbrevis, Streptococcus thermophilus, and Bifidobacteria infantis can reduce urinary oxalate excretion by 24-40%. That almost certainly helps reduce stone formation. Some probiotics that we can purchase with these strains are Accuflora Pro-Biotic-Acidophilus from Northwest Natural and Align Digestive Care from Proctor and Gamble.

Last kidney stone thing, is make sure you don't have low citrate (need 24 hour urine test for that). We often have a combo of high oxalate and low citrate, which is a recipe for making cal/oxalate stones. You can take Uricit-K to address the low oxalate with is a prescription potassium.

I'm not sure if its the urocit-K, probiotics, or both, but I've gone from stones ever 1-2 weeks, to going 2-3 years between, and haven't had a real trouble maker that stuck or got huge in mb 5-6 years.

Since I'm paranoid about bone loss, I asked, and was told, that taking any of these things would not be detrimental as far as bone loss.

Actually there is a substance now that is from a plant I believe from Africa. I am at Dr now but will look more later when I get home. Here is a study link https://www.sciencedaily.com/releases/2016/08/160808115447.htm

 

[KathrynK]

Three Reclast infusions so far (over 3 years). My bloods showed my bone turnover increased and my doctor was pleased.

I'll see her in a couple of weeks and we'll see how my bone turnover is doing this year. If it's still good, I may be able to skip the Reclast this year.

Are you see an endocrinologist, an orthopedist or your internist? Anything injectable is of interest!

 

[Clematis]

Actually there is a substance now that is from a plant I believe from Africa. I am at Dr now but will look more later when I get home. Here is a study link https://www.sciencedaily.com/releases/2016/08/160808115447.htm

Thanks for the link, Scott. Hydroxycitrate is a supposed "weight loss" drug. (The research shows it doesn't work as that. No surprise.) However it sounds like a good alternative to potassium citrate for kidney stones. I ordered some on Amazon. I'm willing to try anything to prevent stones.

 

[aaa]

Are you see an endocrinologist, an orthopedist or your internist? Anything injectable is of interest!

@KathrynK. This is my doctor. Her focus is women's bone health. Recommended to me by 2 doctors and hard to get an appt. as she's booked. I called in Oct. and am going next week. But since you're in NY, it's probably worth it. Plus, she's familiar with the DS (always a bonus) as HSS is across the street from Weill Cornell. She has seen DS patients (and, of course, me ). She's helped my osteo. We can see it in the bloods. She goes over my DS bloods and orders others of her own.

Reclast is more of an infusion than an injection. You sit for a couple of hours as it goes into your body. There are side effects, though. The first infusion (for me) had the worst side effects. It's lessened each time, but I still have them.

BTW, she's not stuck on Reclast. It's just I'd had one infusion done before I started seeing her so we decided to stick w/it and see how it worked. We've discussed other treatments. She goes over each one and why or why not she likes them. If needed, I'd switch to another.

 

[Razbry]

Here is a little nugget that might help someone. I keep track of all my labs and tests...so I have accumulated all my bone density tests for the last 10 years and put them on a graph. Through supplementation alone I reversed my spine from osteoporosis to normal. My femoral neck still stands in the osteoporosis category, but is vastly improved. My MD had called me in to talk about Reclast, because he only saw the report of osteoporosis. Once he saw my progress with bone building, he immediately told me to keep going with my supplementation and dropped the recommendation of Reclast. He was upset with the system, because he did not have access to the information in the form that I gave it to him. Track your own progress people, and take it in with you when you see your MD. I also did a "grid" of Problems (slightly off lab values) vs. Plan of Action (upping or lowering of various supplements). It was so much easier for the MD to see what it was that I was doing. Frankly, I think he was relieved that I was on top of what I needed to do to keep my health. MDs only have so much time for each patient....make the most of it!

 

[Petunia]

Here is a little nugget that might help someone. I keep track of all my labs and tests...so I have accumulated all my bone density tests for the last 10 years and put them on a graph. Through supplementation alone I reversed my spine from osteoporosis to normal. My femoral neck still stands in the osteoporosis category, but is vastly improved. My MD had called me in to talk about Reclast, because he only saw the report of osteoporosis. Once he saw my progress with bone building, he immediately told me to keep going with my supplementation and dropped the recommendation of Reclast. He was upset with the system, because he did not have access to the information in the form that I gave it to him. Track your own progress people, and take it in with you when you see your MD. I also did a "grid" of Problems (slightly off lab values) vs. Plan of Action (upping or lowering of various supplements). It was so much easier for the MD to see what it was that I was doing. Frankly, I think he was relieved that I was on top of what I needed to do to keep my health. MDs only have so much time for each patient....make the most of it!

I know we are all different but would you share what you are taking to reverse your osteoporosis? I'm getting my third injection on Tuesday of Prolia and the insurance company wants a bone density in April to see if it's working, if so they will continue to pay for the fourth injection.
Thank you,
Ruby

 

[Razbry]

I hope the attached helps