NEW TO OSTEOPOROSIS

[dao94566]

Was diagnosis with osteoporosis about a month ago. Has me feeling pretty scared. Seems like there is no treatment that is safe to help strength bones. The drugs seem to have such bad side effects. Would not mind taking them if I knew that they would reverse the osteoporosis.

[Met00]

One of the main causes of fractures is falling, so exercises to improve your strength and balance are important for reducing fracture risk. It's also been shown that high impact exercise plus progressive weight training can improve bone health and reduce fracture risk. If you do decide to go down the medication route, be aware that bisphosphonates only have a 50% chance of preventing fractures, while denosumab (Prolia) if stopped needs to be replaced immediately by a bisphosphonate as a relay drug to reduce the risk of rebound fractures. I share your concerns about osteoporosis medication, although I might reconsider if I considered my fracture risk were high. We're told fracture risk is high if there's a 10% or higher chance of fracture in the next 10 years, but that's a 90% chance of not fracturing in that time, so I find that official risk evaluation very puzzling!

[FearFracture]

Not all osteoporosis is the same and don’t let your doctor or anyone else push you into doing anything (taking meds) before you have the chance to learn more about your bone health and the options available.

If you go to my bio there are several helpful informational links (you may have to cut and paste them in your browser). One is to a list of tests that you should have/discuss with you dr. before taking osteo-meds (if your bone loss is being caused by Celiac or parathyroid gland issues, no amnt of osteoporosis meds will help). There is also a link to a bone turnover marker pdf. There is some overlap between this pdf and the tests on the 1st link I mentioned—getting your bone turnover markers tested BEFORE taking meds gives you a baseline for comparison.

You didn’t list your t-scores or if you’ve been fracturing. Those are important parts of the equation. I was diagnosed w/ osteoporosis at age 50, my lumbar t-score was -3.9 and my hips were both around -3.1 but I had and still have NO fragility fractures.

My doctor didn’t do any tests for secondary causes nor did he test my blood turnover markers but he did push meds. Unfortunately, I didn’t learn the info I’ve shared w/ you until after taking osteo-meds and now I have to back track to get a better picture of what is actually going on with my bones.

The meds are appropriate for some/many ppl but take a deep breath and give yourself a chance to digest your diagnosis and to educate yourself about the options available.

You may also want to look up OsteoStrong.me to see if there is a location near you (If there were one w/i a 2 hr drive of my home I would sign up for their program) and look up Marodyne LiV (Margaret Martin, MelioGuide, interviewed Dr. Rubin about the Marodyne LiV—if you look it up you should be able to find it).

Also, if you are a candidate for HRT, you might want to discuss starting HRT w/ your doctor.

[ORdogmom in reply to FearFracture]

First, thank you. I am new to this also, and your posts have been very helpful. I was wondering if you know, does the effect of celiac have to do with the actual disease, or does it have something to do with the lack of gluten? I am intolerant, and have been gluten free for 20+ years. I work out, am extremely active, do a lot of heavy lifting in the garden, and have recently had the experience of my dog taking me out while playing ball which resulted in a hard fall and a really bad sprain, but nothing broke.

My PCP told me : there are a lot of great drugs for it nowadays. You only have to be on them for 2-5 years, and then you go off, and are set for life. She then told me about the bisphonates being tough on the stomach, but there are shots….

I came here, found out that the Prolia we had decided on was not the silver bullet she had promised it to be, and am now awaiting an appointment with a different PCP.

So, is there somewhere I can read about the celiac issue, or what more do you know so I can go into my next appointment knowing as much as possible?

Thank you

[FearFracture in reply to ORdogmom]

I too am NCGS (non-celiac gluten sensitive). I have one of the 2 genes associated with Celiac but I don't have Celiac. I've cut out gluten but I'm not concerned about trace amounts (if someone who eats gluten makes a sandwich in my kitchen, I don't worry about cross-contamination).

Kevin Ellis bonecoach.com/ is a great source for info on Osteoporosis caused by Celiac. He developed Osteoporosis because he had undiagnosed Celiac disease. When he switched to a gluten free diet, he was able to heal and reverse his bone loss.

The main way Celiac affects bones is that it damages the villi in the small intestines and then the body can't absorb needed vitamins and minerals, which eventually leads to bone loss. When people with Celiac stop ingesting gluten, the villi generally heal and can then take in needed nutrients.

NCGS ppl can experience a variety of negative effects when they eat gluten but only those with Celiac will have damaged villi; however, gluten can cause inflammation in the body and any inflammation can effect one's general health and/or bone health.

You mentioned that you fell and didn't break anything--that is a good sign. When I first started researching Osteoporosis, I found an article in the BJM that pretty much stated that the biggest difference between those who fracture and those who don't isn't who has osteoporosis, but who falls. LOL. The goal is not to fall, but if you do and you don't fracture, then take that as a positive--your bones aren't as weak as some might want you to believe.

What were the t-scores on your DEXA scan? Were all of your scores in the osteoporotic range or were some showing osteopenia?

Regarding Prolia, you definitely don't want to start that without more information. It's not really intended to be "for life" but to get off of it you have to be able to take a relay drug to avoid rebound fractures. It is my understanding that generally after stopping Prolia ppl need to take bisphosphonates for 2 years, so before starting Prolia you want to make sure you can tolerate oral bisphosphonates or be willing to have 1 or 2 zoledronic acid (Reclast) infusions. Additionally, ppl with Kidney problems can't take bisphosphonates and if they start Prolia they are kept on Prolia indefinitely.

When I was diaganosed in 2019, at age 50, I really didn't think much of my diagnosis. I don't have any fractures, I haven't lost any height, and in 2019, I was in the middle of moving and was busy lifting boxes and furniture and I fell twice during all of this and didn't break anything. When I had my follow-up with my PCP she mentioned osteo-meds and I told her I preferred not to take meds and she told me I should speak with my endocrinologist.

I'd been seeing an endocrinologist since 2017 because that's when I was diagnosed with Hashimoto's thyroiditis (hypothyroidism). I've pretty much been taking 75 mcg of levothyroxine daily, ever since. So during my next appt with my my endocrinologist in early 2020, he told me my bones were "horrible" and prescribed alendronate. I asked him if there were any natural solutions and all he had to offer was take 1200 mg calcium, vitamin D, walk and lift light weights--if these things worked, I wouldn't have osteoporosis--so I followed his advice and took the alendronate.

1 year and 4 months later, when I went to a new dentist and had to fill out the paper work, there was a question about Osteoporosis. I asked my dentist why they asked that question and she mentioned ONJ--my endocrinologist never mentioned ONJ to me. I was furious. No doctor should prescribe bisphosphonates without telling a patient to have a complete dental exam (including x-rays) and to discuss taking bisphosphonates with his/her dentist. Fortunately, I have no dental issues.

Since July, I've been due for another DEXA, but I wanted to wait until November to have it because I had my 1st (possibly only) zoledronic acid infusion last November. I've spent 3 months trying to find an imagining center that can do a DEXA with TBS (trabecular bone score/scan)--my endocrinologist has been ZERO help on this. I finally found an imaging center that is 4 hours away and I have an appt set up next week. TBS is a better indicator of bone strength that's why I want to have this information--also bisphosphonates do not improve trabecular bone so if my TBS is low it might indicate that bisphosphonates aren't the right approach.

The main thing I would recommend that you do is to look at the links I recommended in my original reply. Make your doctor run the tests and get your bone turnover markers checked.

When I started doing my own research (around December 2021 / January 2022), I looked up something like how can I make my body absorb more calcium. That is when I learned about the parathyroid glands and that when your bloodwork shows that your calcium levels are in the normal range that doesn't mean your are getting enough calcium--the parathyroid glands work to keep your calcium levels in the normal range, so if you ever have bloodwork that shows that your calcium levels are outside of the normal range that means you definitely need to get your parathyroid glands checked. If your parathyroid glands notice that your calcium levels aren't where they should be, the parathyroid glands release PTH to go "find" calcium, which can mean taking calcium from your bones.

I also learned from my research that the body can't absorb large doses of calcium at one time so I switched from taking 600mg supplements to Citracal Petites (each pill is 200 mg) and I now take smaller doses of calcium throughout the day--between my supplements and diet I aim for 1200-1500 mg daily. After all of my reading, I also decided, on my own, to make the last thing that I take before going to bed at night, a calcium supplement. I would prefer to drink a glass of milk but if I drank 8 oz of milk before climbing into bed I would have to get up 2 or 3 times to use the restroom A few weeks ago, when I was researching bone turnover markers, I found the article below which seems to support my decision to take calcium right before bed. The article states, "The intake of food influences bone turnover. Dietary calcium appears to inhibit bone resorption. Calcium supplements taken in the evening significantly reduce resorption markers, in the fasting state, the next morning."

nps.org.au/australian-presc...

[ORdogmom in reply to FearFracture]

thank you so much. I will look into all of your suggestions.

T scores are -2.7-2.8 for most everything but the lumbar spine, which was -3.4. Like you, I have been beating up on my back, the last 5 years for me. First readying one house for sale and move, then creating a garden in the new house. I may be 66, but I have moved 17 cubic yards of soil, compost and mulch over the last 3 years, all involving the twisting and lifting of shoveling

Now I know I should not be doing that to my back.

I started collagen, and now taking more calcium, though I will now try to divide it up into 4 separate doses a day I have been taking it at night, but unfortunately have been taking it at the same time as my magnesium, something I am now changing. I added K to the mix.

I am in great shape, agile, my biggest fall risk is overexuberant dogs playing around my knees

I have an appointment with the new doctor next week. At least with this one I will go in a lot better armed with my own knowledge.

Thank you again for your help

[FearFracture in reply to ORdogmom]

After being diagnosed but before understanding much about my DEXA results, I dug up approximately 18 established bushes in my yard, root ball and all. It was grueling work and I’m a small person—fortunately, I didn’t do any damage to my spine. I have since researched how to do every day tasks when you have osteoporosis. Big takeaway is to bend at the hips and avoid forward flexion of the spine (forward flexion has the potential to cause crushed vertebrae). I practice hip hinges regularly and do daily balancing exercises while brushing my teeth.

What collagen are you taking?

[ORdogmom in reply to FearFracture]

I guess we are birds of a feather. I have dug root balls up-even of a couple of small bay trees I took out. “We Are The Champions” kept running through my head as I got to the end…..

Codeage is the collagen I settled on. I started with another that I had seen an ad for, then got inundated by one “special offer” after another, so found a different source after reading all the offerings on Vitacost. Is there a better one?

[FearFracture in reply to ORdogmom]

I was hoping to learn more from your choice in collagen supplements.

I have made a lot of changes throughout 2022, all in an effort to improve my BMD. I read a lot about the importance of getting enough protein—as ppl age they tend to eat less protein but w/o protein you can’t maintain muscle mass, and you need muscle mass to support and build bone, and there is evidence showing that older ppl need to increase their protein intake—A 75 y.o. relative recently had knee replacement surgery and one of her pre-procedure requirements was to start eating more protein before and after the surgery.

In order to make sure I get enough protein, I decided to add a protein powder to my daily diet. I use 2 different protein powders, Isopure Whey Protein Isolate, which was recommended by a bodybuilder/health fitness person on twitter (note, this person is totally random, meaning I do not know him, but decided to take his recommendation), and Vital Proteins Collagen Peptides, which I just picked because of the collagen. I alternate daily between the 2, and I only use a 1/2 serving and I mix it with 8 oz. of 1% milk.

Also on my list of things to “maybe” change is to start making my own bone broth and drinking a cup of bone broth daily. It’s supposed to provide collagen among other things and all the bone health gurus seem to think it’s a good idea to drink bone broth. I actually asked my butcher about buying bones to make bone broth a week ago, so maybe I will get around to it at some point. LOL.

Another thing that is highly recommended is eating foods that contain probiotics. I’ve always eaten yogurt but not daily. Now, I make sure that I eat at least 2 tablespoons of sauerkraut, kimchi, Greek yogurt or apple cider vinegar daily.

Additionally, I’m convinced that one of the biggest down falls in the Standard American Diet (SAD) is that we have completely messed up our Omega 6 to Omega 3 ratios. I take a fish oil supplement everyday and I’ve been trying to get in the habit of eating 1 can of sardines over the course of a week—I don’t have this totally worked out but I do eat sardines on a somewhat regular basis—they are super-high in Omega 3s and a great source of calcium and vitamin D and since sardines are small fish you don’t have to worry about mercury levels. I buy King Oscar wild caught sardines in extra virgin olive oil.

I’m NCGS (non-Celiac gluten sensitive) so I avoid gluten, which means avoiding most processed foods, and this alone can help to get your Omega 6 to Omega 3 ratios back on track.

Another thing you might want to look up is the prune/osteoporosis study—there is research showing that eating prunes daily can increase bone density. The original study was done with 10-12 prunes daily, but they also found that 5-6 prunes works. I’ve been eating 6+ prunes a day since last December. To be honest, I’m getting a bit tired of eating prunes every day, and many on this website say that taking a boron supplement is as good as eating prunes, so I’m toying with the idea of switching to a boron supplement or alternating between prunes and a boron supplement but I won’t make any more changes until after my DEXA which is coming up soon.

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ADDED on 11-30-22

Was looking up info on improving bones naturally and found this article

medicalnewstoday.com/articl...

which states:

7. Eating more protein

Protein plays an essential role in bone health and density, and a person should ensure that they have enough protein in their diet.

A studyTrusted Source involving about 144,000 postmenopausal participants found that those who ate an increased amount of protein saw a boost in overall bone density. Collectively, the participants who ate more protein also experienced fewer forearm fractures.

Talk with a doctor before significantly altering protein intake.

8. Eating foods rich in omega-3 fatty acids

Numerous older studies have determined that omega-3 fatty acids play a role in maintaining bone density.

Omega-3 fatty acids are present in a variety of foods, such as salmon, mackerel, nuts, and seeds. People can consume these fatty acids through their diet or through supplements.

[dao94566 in reply to FearFracture]

Thank you so much for the information. Makes me feel like there is hope.

[FearFracture in reply to dao94566]

You are welcome.

Here is a link to Belinda Beck theboneclinic.com.au/our_te... She ran the LIFTMOR studies. Also check out the Bone Clinic in Australia theboneclinic.com.au/ Women in their 70s and 80s, with supervision, are able to increase their bone density by lifting heavier weights and without osteo-meds. Unfortunately, doctors in the US seem to ignore this option and probably won't tell you about the LIFTMOR studies--my endocrinologist did not share any of this information with me.

I see you are in the US and I'm going to assume you won't be able to get to Australia; however, you could work with someone to develop a safe but strenuous exercise program to improve your bones. Note, if you are fracturing you need to be very careful.

At BetterBones.com Dr. Brown talks about a client, Cindi, who, in her mid-60s, was able to reverse her osteoporosis on her own. Cindi heard about the LIFTMOR study/Australian Bone Clinic and worked with her son, who is a professional CrossFit and Olympic weight trainer. Follow the link below to read more about Cindi's story.

betterbones.com/exercise/bu....

On Dr. Brown's website (BetterBones.com) she also lists the exercise plan that Cindi was following. In January 2022, I joined a gym (would have joined when I was first diagnosed but couldn't because of COVID). I use the equipment and have been gradually increasing the weights and I do 2 of the exercises listed under "So what exactly was Cindi’s serious weightlifting program which she did diligently for 1.5 years before the follow up bone density?" The FARMER's CARRY - I started with 5 lbs in each hand (I wanted to take it slow) and am up to 25 lbs in each hand, and the BACK EXTENSION--I use the unweighted BACK EXTENSION equipment at the gym. I'm 4'11" which makes me too small for the weighted back extension equipment. I started doing BACK EXTENSIONS at home in January 2022, unweighted, lying on the floor--I found this to be way too simple but since I couldn't use the gym equipment it was my only option. Then I asked someone at another gym and they recommended using YOGA BLOCKS so my feet could reach (LOL) so I bought some yoga blocks (think they are about 4" thick) and I now take them with me to the gym and I am able to use the unweighted back extension equipment and incorporate free weights. I started with no weights and I am now up to 35 lbs. I can actually lift 45 lbs but the weight is too bulky and because of my size it's awkward--until I can come up with another work around, I will stick with the 35 lbs weights.

If you haven't yet, you should definitely look up OsteoStrong.me. While in a bigger city, I visited an OsteoStrong to check it out. There isn't one in my city. The closest is a 4.5 hr drive. If there were an OsteoStrong within 2 hours of my house, I would be willing to make the trip weekly to join their program.

[Kulbir108]

if your willing to do the work there are ways to help the bones get strong …. Excercise diet and more weight bearing ….but most wish to take a fast way w/pill

[FearFracture in reply to Kulbir108]

I'm doing both--the work and osteo-meds. I wanted to just do the work, but when I asked my endocrinologist about ways to naturally improve bone density, his only advice was take calcium and vitamin D and to walk and light weights, additionally he said my bones were "horrible" and he pulled out his prescription pad. Since I'd been taking calcium and vitamin D and walking and lifting light weights, I felt like I had not choice and I followed his advice. I'd been seeing him for my hypothyroidism so I trusted him.

After 1.5 yrs of alendronate with a slight improvement and then having a zoledronic acid infusion, I started doing my own homework and learned there are lots of things I can do to improve my bone healths--things I later learned my endocrinologist is/was aware of but just forgot to mention to me.

I have a DEXA w/ TBS next week--fingers-crossed my bones show improvement--and my endocrinologist is expecting me to have another zoledronic acid infusion. My plan is to get the DEXA and reassess. If my bones show little to no improvement, then I can't see the point in having another infusion. If my bones show improvement, I won't be able to say for sure if it's all because of the infusion, because of the "work" I've been doing, or a combo of the two--since my endocrinologist failed to tell me about or do bone turnover marker tests before prescribing bisphosphonates and 3 months after the infusion, there is no way to know if the bisphosphonates were effective. Additionally, since I had originally wanted to do the work and I am now more optimistic that I can reverse my bone loss naturally, I think I might just give it a go.

Question, which did you choose, to take the meds or do the work?

[montieth]

I've had osteoporosis for over 8 years and finally decided to take reclast last year. If you can find a bone clinic with a group of doctors that specialize in bone health it is highly recommended. I go to a bone clilnic and all the blood tests are done. There is a middle way, of doing all the exercises, nutrition and supplements and still taking some medication for a short time. My plan is to possibly take another dose of reclast but no more.

[FearFracture in reply to montieth]

What made you finally decide to have a Reclast infusion? Had you taken oral bisphosphonates before having the infusion or is the Reclast the first osteo-med you have taken?

I took alendronate for 1.5 yrs and my bones only improved slightly and the alendronate caused digestive tract issues so I took a 4 month bisphosphonate holiday and last November I had my 1st Zoledronic Acid infusion. My endocrinologist is expecting me to have another infusion this year--it was supposed to be in November but I moved it to the end of December because I want to get the results of my DEXA before making a decision on what to do. I am leaning towards not having another infusion. I really want to try to continue working on my bones without the osteo-meds and I can always have the infusion later if I find that my bones begin to decline.

[Pretsini]

We have become conditioned to think that whatever the problem, there is a pill we can take. Perhaps your situation may warrant it, but do proceed with caution and do not hesitate to get a second opinion. Read up on it if you can, from reliable sources such as major clinics with bone specialists, national health libraries, and medical journals who publish independent, company or marketing-unaffiliated research. Some drugs, including Boniva, are more effective for the spine than the hips, my research determined.

I was diagnosed with low bone mass in the femur and hips, which is a precursor to osteoporosis, and prescribed ibandronate (generic Boniva). I took one dose and experienced substantial muscle pain. No more of that! So I am relying on calcium and Vitamin D supplementation in recommended dosages, the recommended level of dietary calcium and appropriate exercise. With no family history of fractures or osteoporosis, only occasional alcohol consumption, no smoking, no other medications or medical conditions, that seems like a reasonable alternative to medication.

It is disconcerting to learn one has osteoporosis, and there are no good, conclusive, quick answers. Those of us on here know!

[NY2GANANA]

please do your research before deciding what to do. Do not be intimidated by the doctors (drug pushers) into taking a drug that may be more harmful than good. There are vitamins and minerals that can be used. A few I started taking in addition to multivitamin and calcium are, vitamin k2, extra vitamin D, a probiotic, and I recently read about collagen peptides that I will also try. I am also doing balance exercises and have removed loose floor mats from my house. Remember that the osteo did not happen overnight and it will not be improved overnight either. So take the time to make an informed decision. My current dr suggested prolia but the Mayo Clinic Dr I saw said he would not recommend that one for me. I wish I would have asked what my risk factor was but didn’t think about it at the time. With or without osteo we all have the risk of getting hurt/breaking bones. Good luck on your research and finding a solution that works for you.

[HeronNS]

You may find my story relevant and learn a few things you can do to naturally improve your bone density. You should also be tested for "secondary causes of osteoporosis" if that has not yet been done.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...