Hi, I'm new to this site

I was recently diagnosed with Osteoporosis and not sure what to do next. I have started researching medicines to take, what exercises to avoid, etc. but I'm struggling to find good info. I'm trying to determine what type of specialist to see and if I should take one of the bisphosponates my GP doctor recommended but am really concerned about the potential side affects. Trying to determine if I can reverse this or improve it without taking those drugs.

[Met00]

What led to your osteoporosis diagnosis? Have you had a fragility fracture? Do you know your FRAX fracture risk score? If you haven't fractured, it's quite likely that medication shouldn't even be recommended, but that will depend on your FRAX score. It's worth bearing in mind that bisphosphonates only reduce your personal fracture risk by 50% (so if your risk is 10%, that would mean 90 in 100 people wouldn't fracture anyway, and if all 100 took a bisphosphonate, only 5 fractures would be prevented, the other 5 would still fracture). See nice.org.uk/guidance/ta464/.... Most people fracture as a result of falls, so reducing your risk of falling is likely to have a greater impact than taking a medication.

[GardenerJH]

I would recommend reading about the Canadian C.O.M.B. study done about 13 years ago and the Australian study where eating 6 prunes a day increased bone density. I am taking the micro nutrients used in the C.O.M.B. study, the prunes, collagen peptides in my morning coffee and bone broth in my lunch time soup. I do not take any Calcium supplements or other medications. I am also increasing my weight bearing exercise. I am also eating a paleo diet which is no grain or dairy. I won’t know until the end of November if it is working but it has definitely improved my arthritis.

[TWEETYCAT in reply to GardenerJH]

Could you please post your results in November when you have your next scan?

I have switched to sprouted breads, which is greatly reduced in phytic acid, which greatly reduces the absorption of nutrients, especially calcium, iron and zinc. Some nuts are high in this acid as well, so I have greatly reduced that as well. I take egg shell calcium and it's supposed to absorb over 70% better by your body than other forms of calcium without those side effects. My next scan is in May of next year.

[LilEgg in reply to GardenerJH]

This is good to know..are the prunes fresh or dehydrated?

[GardenerJH in reply to LilEgg]

They are dehydrated

[LilEgg in reply to GardenerJH]

Thank you…I started today with the prunes and I’m waiting for my order of the collagen peptides thank you again

[GardenerJH in reply to LilEgg]

I really like the collagen peptides. I have been using them every day since January. I told my sister that even if they don’t help my bone density I was going to keep taking them. They have made a great difference in my hair and skin. My eyebrows even have grown back. I am very happy with them. Good Luck!

[LilEgg in reply to GardenerJH]

Thank you!

[hogsed in reply to GardenerJH]

Do you take a pill or powder ? If a pill, do you mind to share the brand ? Thank you.

[GardenerJH in reply to hogsed]

I take the the powder from Costco. Vital Proteins.

[TWEETYCAT in reply to GardenerJH]

I started eating 5 prunes a day a couple of months ago and I use the Orgain Collagen Peptides with probiotics too. Get them from Costco's at a great savings. So far so good!

[Ninu101 in reply to GardenerJH]

Hi, COMB's study also includes strontium, do you take it? I am little confused because few doctors say that it gives false reading on dexa and if you stop, it goes away. I believe same thing is with the osteoporosis drugs, once you stop taking the effect reverses again also, doesn't stop from getting fractures. I am afraid of taking any medications due to long list of side effects. Doing Dr. Fishman's yoga and planning on getting low intensity vibration machine.

[GardenerJH in reply to Ninu101]

I a taking the strontium but it is a low dose and I take no calcium supplements. My sister is using the low vibration plate. I am anxiously awaiting her results in January to see if it justifies the price.

[Ninu101 in reply to GardenerJH]

Thanks, please keep us updated about her progress.😀

[Ninu101 in reply to GardenerJH]

How much strontium do you take and why not calcium? Thanks.

[GardenerJH in reply to Ninu101]

I take 680 mg of Strontium citrate a day. That was the amount used in the COMB study. Whenever I have taken calcium in the past it upset my digestion. I also feel that I get enough calcium in my food and that it just wasn't going to my bones correctly. I am not sure the strontium is necessary and may drop it in the future. I think the K2 both in the supplements and in the prunes is essential. I am only taking the strontium since it was in the COMB study and I wanted to follow the total protocol until my osteoporosis went away.

[TWEETYCAT in reply to Ninu101]

I switched to organic egg shell calcium. It has naturally occurred strontium and does not affect your arteries and your heart like other forms of calcium. Unfortunately, Dexa scans are only as good as the person interpreting them and the person who positions you on the table. You would think they could come up with a standing scan. Good luck to you because I know this can really be scary.

[kimmw728]

I am the same age as you and was diagnosed 2 years ago. There is a lot of good information and poor information out there. I binge watched Dr Doug Lucas on YouTube. He also offers a free masterclass for more info. There is blood work you need done to determine the cause and also monitor bone metabolism. If your doctor is not doing this, find a new one. (My opinion. I fired my IM physician for her lack of care and updated guidelines.) If you can find a location for a REMS scan (Canada may be closer), I would strongly recommend that. You can determine bone quality. I wish you all the best!

[josephinius1]

I'm with everyone who's already replied...also still kind of new and exploring myself still. I was diagnosed in January, was really panicked at first because my scores seemed really bad and it also seemed likely that at least some of my back injuries/issues were fractures...I'd thought, "My back feels broken," which seemed absurd, but I did feebly attempt to find out (via x-rays from chiropractor, who was easy to get into, kind, and inexpensive,) but the person who evaluated the x-rays said "no evidence of fractures" and when I complained about my back to my PCP, she took that as "good enough" to not explore further...so I went nearly four years after my first injury not knowing what was wrong...anyway, point is, the DEXA numbers put the pieces together, probably I HAD had fractures, and we've lost a lot of time, and NOW, my PCP is leaving me hanging? (It took her ten days to get back to me about results; by then, I had no interest in talking to her, but I'd also learned the endocrinologist I found online who specialized in both thyroid and osteoporosis, (I also have thyroid issues,) was booked 6 months out and wouldn't see me without a referral anyway, she said, "Take whatever you PCP prescribes, meantime," but I'd had enough time to explore sites like this and I "knew" my PCP would prescribe fosamax, and I "knew" that was not actually the frontline choice for people who already had fractures.

So, it was frustrating, and, it's still frustrating. Eventually I caved, got a new PCP who referred me to an endocrinologist (the one I wanted to see was no longer accepting new patients,) after I went to urgent care and got another x-ray, this time with evidence of at least three compression fractures. It might have helped me get seen a bit faster, but it hasn't impressed my insurance. Despite the endocrinologist prescribing Evenity, which he apparently believes is the strongest drug and most appropriate for my situation, which is severe, my insurance denied it. At this point, I haven't heard back from the doctors (now a rheumatologist is involved, supposedly they contacted him,) as to next steps, but I can feel the medication cards being shuffled all over again. Insurance suggested Forteo or Prolia would be more appropriate, and I'm guessing I could get that Prolia shot pretty quickly, but the endo, who did have it on my list of options for LATER...I'm guessing...will disagree that that's where I should start (and I don't want to take it at all.) He never even mentioned Forteo, but I'd probably take it--I too am a Dr. Doug Lucas adherent (so far,) and he says IF they prescribe, they prefer Forteo or Tymlos. But I know Forteo is also expensive and the only way I could get it is through the pharmaceutical company's plan for the needy. (I have a new friend who's on it, she's paying $4 a month, pretty decent deal. But it did require an application process, etc. so took some time.)

So I figure by the time I actually have a drug in hand (I did take fosamax five times, by the way, but had the pain my my esophagus, which my PCP said "take Tums" for, but endo said, "That's not good, don't take it, not worth it,") I'll be getting close to the one year anniversary of this diagnosis.

Now, I have also been seeing a naturopath, figured what's the point of taking drugs if I have absorption issues, or other problems that could be contributing to bone loss? I was told by a doctor (retired) who responded to an online comment tell me naturopaths are witch doctors (it's SO fun out here,) and I do think she does some kind of woo woo things, but she also has me do tests no one has ever suggested. (Lots of blood tests, but also Metabolomix, and a Vibrant labs test for heavy metals and toxins.) I'm sure "real" doctors don't bother with these things because a) It's overwhelming, b) What's new? and c) It's easier to prescribe a drug.

And I was indeed overwhelmed, because it seemed like everything that could be off was off, for me. Still, in the absence of hyperparathyroidism or multiple myeloma, etc. (all of which I've now been tested for,) it's like the only "answer" (besides "bad luck",) for why MY case is SO bad.

And there's a LOT I didn't know about Hashimotos/hypothyroidism but when you think about it, everything is ultimately metabolic, and if the thyroid regulates metabolism, we shouldn't be surprised if people with thyroid issues have metabolic issues. I know, the real doctors will say, "But you're taking medication, your levels are good, so you're fine." To which I'd say, my body, my experience says otherwise.

To make a long, long story shorter, I'll just say, I'm trying everything. I'm taking boron and strontium, (Dr Doug Lucas said strontium is likely appropriate for my case, others think he's crazy but if we think taking fosamax, which is so poisonous it can cause an ulcer if it merely makes contact with your esophagus, I think I can risk strontium.) I'm also taking digestive enzymes, a strong probiotic, cod liver oil (on that note, I raised my D level from 44 to 107--yikes! Either I've improved absorption generally, or taking Vit D with a fat really does make a difference!) and I've changed my diet. I've always exercised; that's actually been the hardest piece, because I DID already lift weights, I ran, I took functional mobility classes that made me move all the ways and jump and climb, etc. and all my regular stuff was now hurting me. (Whatever injury I've had, it's happened during the course of intentional exercise. I haven't fractured from just bending over, or getting hugged. Always exercise.) So that's been tough. But I'm starting to accept that I can't get after it like I used to. I can, however, use a vibration plate, and I "do weights" while I'm on it (being on it prevents me from twisting--I'll fall off, right?) I can "run" gently on a rebounder, and I can walk. I'm actually looking into Osteostrong today. That's another controversial (and expensive) option, but if it looks like it truly would be safe, while also loading my bones in a way I really can't do right now, it might be worth it.

So now it's like I'm an experiment. I'm the person doctors think even drugs aren't going to help that much, and for sure "natural" methods will do nothing. And maybe they're right, but we've waited this long--I might as well prove it to myself. Because honestly, I don't want to take the drugs. If we were talking a year or two, it'd be one thing, but we're looking at decades. I'd at least like to rule out natural options first?

I'm not looking forward to telling the drug doctors that I want to wait until January at the earliest to start, but...then again, it may BE January before we sort it all out anyway.

If anyone read this, God bless you.

And good luck to you!

[Kitchenbuddy in reply to josephinius1]

Sorry for your unfortunate time with the medical professionals out there. I was diagnosed with severe osteoporosis a few years ago and the chiropractor I went to scared me so much I called my primary who said I did not have to worry about fractures unless I fell and not to move or lift heavy objects. My dexa was -3.5 a few years ago. I am active and exercise daily. I may not build bone at 67 but I am going to stay off the meds as long as I can. This is a personal decision and if I had fractures then I may change my mind. Until then I will do it my way. Best wishes.

[josephinius1 in reply to Kitchenbuddy]

Absolutely! You keep at it!

[beckyiswell in reply to josephinius1]

I was ordered Forteo, got denied, Dr reapplied but for teriparatide, the generic, and I was approved. Tolerated well except developed a kidney stone and had to get off it after 14 months. Just started Evenity.

Had 1 spontaneous fracture, kyphoplasty, then 2 fractures due to falls. Needed spinal fusion surgery T8 to L2. Not looking forward to the future.

[Ninu101 in reply to josephinius1]

Wishing you all the Best. Hope you get the all care you need.

[josephinius1]

Hey, just noticed your moniker; are you in the "pacific northwest?" I am, too. Portland. 😀

[RubymyT]

Hi

It is so smart you researched the medication before taking . I took Actonel for a little over 2 years. I was very happy it was only once a week , never had a problem. This year I was told it hasn't been working.

If it doesn't work you graduate to an injectable ,Once every 6 months. EasyPeasy

If it were the kids I'd research but ,never for yourself

I started experiencing bone pain ,mainly in my feet ,which made walking very uncomfortable. I couldn't think of anything that would be causing it .I decided to research Prolia, its the only change I had made , first dose 5 months earlier.

This is a medication that you cannot just stop taking. It can cause spinal fractures if discontinued and not replaced with ?? immediately. The side effects while taking are bone pain, plus a variety of other very unpleasant reactions.

I wouldn't be worried if you are not taking an injectable .

To get the best info , I would go to a Rheumatologist .

Before Actonel ,I've had both elbows, a hand fracture. and multiple spinal fractures. I was told I don't have Osteoporosis Yet . I just have Osteopenia . That's what you get before Osteoporosis .

I've been told by my GP, once you have Osteoporosis , it's for life.

Good luck

Arla

[josephinius1 in reply to RubymyT]

Thanks for sharing your experience.

It's definitely been interesting researching lots of things. Probably I already noted that even my limited experience with doctors suggests they can disagree...maybe they don't disagree in a global sense, (You need drugs,) but which drugs or how to test/what tests are necessary, outcomes, etc. can be very different.

I've decided--and I think this is true in any facet of life--that any doctor/expert who says "never" or "always" with respect to a health condition is someone I will take with a grain of salt. It seems obvious maybe especially with osteoporosis that they don't know. I agree, from the sound of it, it seems like once you have something like osteoporosis, that's it. The mechanisms that caused it are too hard to isolate/change, age is always working against us. But it also seems super defeatist to SAY that. Why wouldn't you WANT someone to be working on it? Why wouldn't you want them to have hope?

Probably it's just MY own defeatist tendencies being tweaked, (and I have to fight them lest I give up and hate my life even more?)

I don't know. I'm not following in my mom's and grandma's footsteps in terms of health, but part of their "health" did seem to be "denial". My grandma especially, she definitely didn't ruminate on her health issues (didn't have access to rumination tools? internet?) she just got up every day and did what needed to be done. Her hip was like dust, as I translated what I heard about it; not just bone on bone, but bone that had fractured, in the course of life not as a result of a fall, multiple times. She did say it hurt sometimes, but she still got up and walked every day until at least age 102. (She lived to 104.) Outside, I mean. Got her cane, took a spin around the neighborhood. It was good for her mental health too, and for all we know, it helped her manage pain, got blood flowing to the hurt spots...who knows? And this was after she had an aneurysm (same thing that killed John Ritter,) that was supposed to have killed her. She just didn't know, apparently, what that meant, so, she just kept living, and walking.

Maybe I have THAT in me, at least. And who knows, maybe I CAN...slow the ship down. I'm not thinking I'll ever not have osteoporosis--the ship is too far gone. But there's no point in thinking my efforts can't turn it around. And it just seems foolish for doctors not to try to engage people in their own health mission. I know it's work for THEM, too, but...

Just ranting. Sorry.

[RubymyT in reply to josephinius1]

You don't have to apologize . I don't know where you are , but I'm in Canada, our health care is like not having health care. If you have a family doc , count your lucky starts. If they aren't any good, not much you can do about it. I had a great doc , then he switched to counselling b/c of the crap the government was pushing here.

You are so right about doctors, I tried to tell my GP about the effects of Prolia. She argued with me saying it wasn't so. I wouldn't back down, told her I'd listen to her rant as long as she looked up the side effects.

Needless to say, she was greatly surprised that she was incorrect . She would never say that I was right , but see didn't know what to do. She actually said "if you weren't so smart you would not even know about this".

What the hell is that supposed to mean ? The world is a mess right now, we live in Bizzaro world. My daughter needed a referral to a specialist, she was told it could be a 3 year wait.

Well thank you for allowing me to rant.