Scared in Oklahoma

[Misty2020]

I just found out I have osteoporosis. I am so scared about taking any kind of prescription drugs

[Capan24]

I am scared about taking medications too. I am 62 and my recently bone scan showed osteoporosis. I have read so many negative things about the medications. Right now, I am only taking Calcium Citrate. I also have thyroid issues (Hashimoto's) which effect metabolism. Also had Hyperparathyroidism with 2 of my parathyroid glands removed due to tumors. I exercise daily and eat heathy (Vegan). But it does not seem to be enough. I joined this group in hopes of finding answers without medications. Good luck to you.

[Misty2020 in reply to Capan24]

Thanks, it’s so scary I’m going to try to see Rheumatologist but he’ll probably want to put me on Fosamax . It sounds like you’ve had a really tough time I wish you the best of luck.

[Misty2020 in reply to Capan24]

I’m also taking citracal calcium , vitamin D3 , magnesium and K2 quit caffeine and I exercise regular. I don’t know what else I need to do I wonder if anyone has any suggestions😢

[Met00 in reply to Misty2020]

What type of exercise do you do? The best form, if it's safe for you, is high impact (eg jogging, dancing, skipping, jumping), plus exercising with weights and resistance bands, gradually increasing the load.

Have they investigated the cause of your osteoporosis? Sometimes treating the underlying cause can help restore bone density, or at least slow down bone loss.

[FearFracture in reply to Misty2020]

Go to betterbones.com/testing/wha... for a list of tests you should discuss with your dr. My endocrinologist did NOT do this but I highly recommend having the bone turnover marker tests done before you start any meds. I read Dr. Brown (of betterbones.com) book and found it very informative. I also read the Calton’s book—the wife 1/2 of that team reversed her bone loss naturally. On betterbones.com search for Cindi’s Story to learn how one woman reserved her bone loss naturally. Look up Osteostrong.me. If there were an Osteostrong w/i 2 hours of my home I would have signed up for their program.

[NY2GANANA]

I too am 62 and recently informed that I have osteoporosis-3 on both hips and spine. I do not want to take the drugs suggested and am seeking other doctors advise. I am now taking vitamin K2 along with calcium with D and multi vitamin, melatonin and magnesium. I need to come up with a workout routine that works for me. I also have had hypothyroidism for 30 years and post menopause for 20 years. I am the osteoporosis poster child lol. I seem to have all the traits that can cause it. I will wait to hear the other doctors opinions but I don’t think I will be comfortable taking any meds, the synthroid is enough and may have had a factor in this also, as I have read during my research on the subject. Good luck in your decision. Be sure to take time to research and think about treatment options.

[Meme50 in reply to NY2GANANA]

I am on the vitamin train too after reading up on side effects of medication treatments. Let’s hope it works. Good luck.

[Misty2020]

I haven’t talked to my dr yet . I got the report from scan . -2.5 hip lower back -3.9 . I golf 4 times a week , do a lot of walking with my dog. I have never broken bone . I’m 67 yrs old . I don’t smoke or drink. I did drink coffee and tea but since I saw that test I quit caffeine.

[Met00 in reply to Misty2020]

My last DEXA scan gave scores of -2.5 hip and -3.6 spine, and like you, no fractures. I had a REMS scan 15 months later, which confirmed an error in my DEXA scan, my scores with REMS were -2.6 for both. I'm 65, was diagnosed nearly 8 years ago and don't take meds. I know REMS isn't widely available on the US, but would recommend having one for a second opinion if you can access it. That's a big difference in scores, suggesting an error in one or both.

[DonEnrique in reply to Met00]

May I ask where you received your REMS test? Thanks.

[Met00 in reply to DonEnrique]

I live in the UK, where they're available (privately, not on the NHS) around England and in one or two venues in Scotland.

[FearFracture in reply to DonEnrique]

I'm in the US and I wrote to the company a few months ago and got this response.

Hello,

I am Vicki Baldwin, the Clinical Application Specialist for Echolight Medical, USA. I was given your information because you inquired about being able to find a facility in your area to have a scan performed.

Currently the sites that are available for clinical scanning of patients are in New Jersey (2), North Carolina (2), and Maryland (1). We are working very hard to get the word out of our newly open US operations, and we will update you of any openings near you if you want to be included on our mailing list! I am attaching a pamphlet of information meant to be printed and share with your Doctor.

Below are sites available for REMS exams:

Dr. Kimberly Zambito ( Orthopedic Surgeon)

Mercer-Bucks Orthopedics

Lawrenceville, NJ

855-896-0444

Dr Andy Bush ( Orthopedic Surgeon)

Central Carolina Orthopaedic Associates

Sanford, NC

919-774-1355 (ask for James)

Dr. Edmund Maclaughlin (Rhuematologist) and Dr. Curtis Foy (Family Medicine)

Rheumatology Associates of Delmarva

Easton, MD

410-819-6545

StrengthX

Dr. Mike Lewen (Chiropractor, Exercise Science)

Asheville, NC

828-505-7200

(Brand new location, call for scheduling information)

XBody Health, Wellness, and Spa (Bone Density only, Bone Quality currently not available)

Wayne, NJ

973-869-5806

Locations coming soon: Lubbock, TX; St. Louis, MO. As stated above we are in talks with many more and will update this list as they become available.

Please let me know of anything else you need!

Kindly,

Vicki

Victoria Baldwin RT(R), RDMS, RVT

Clinical Sales Specialist

Echolight Medical LLC

[e-mail]

echolightmedical.com

M: 901-355-1238

O :425-658-0607

[DonEnrique in reply to FearFracture]

Thanks so much!

[Misty2020]

I don’t know if I should give up golf . I have read mixed opinions on that. Does anyone know if I should quit golf ??!

[DonEnrique in reply to Misty2020]

I have the identical scores as you and every expert I have read recommend no twisting of the spine at all - not even while exercising at home.

[dcdream in reply to Misty2020]

I was told no twisting or turning and to stay away from golf, bowling and kayaking.

[dcdream]

I have read that golf and bowling are both bad for the spine. I don't do either and still have a spine score like yours.

[dcdream]

I am 68 and have similar scores or yours. For 10 years any doctor I see tells me I am doing all the right things but I need the meds. Doctors tell me I will be taking meds off and on for the remainder of my life once I being the fosamax train. That said, I continue to eat right, take vitamins for bone health, exercise daily, etc. I do not have any underlying conditions for osteoporosis. I continue to run the risk of fracture and hope that by being aware and careful, I will not fall and cause a fracture. I have seen several types of doctor for osteoporosis and they all push drugs. Thats the norm. I saw my mom follow that routine and now at 90, she continues to fracture and lost 7 inches in height. So much for the drugs, as it appears her dense bones are brittle and prone to fracture. Now that she has a hump, falling is easier than ever. I remain disappointed and feel helpless in my condition. As primarily a woman's disease, it appears the drug companies are content to push a drug with such side effects because if you do get them and find your jaw deteriorating, ulcers in your esophagus, thigh fractures from normal leg use, you cannot sue them for having such a drug on the market. The Supreme Court upheld that for the drug companies and therefore, there's not much concern for drug companies to develop other drugs that may have less complications and side effects.

[DonEnrique in reply to dcdream]

Here is the problem for me. I was diagnosed last year. - 3.8 lumbar. Compression fracture L-1 in March. I'm doing all the natural remedies like most here, but if I fall and break my hip, my life expectancy goes down to 1-2 years. I'm 78 male. I'm going to be starting Forteo because I'd rather take the drug risk than the hip fracture risks. But of course, everyone has different circumstances.

[dcdream in reply to DonEnrique]

At least you are older and will not have a decades long cycle of off and on these drugs. Unfortunately we don't have lots of options.

[Misty2020]

dcdream you don’t take any Fosamax ? Or any pharmaceutical drug ?

[dcdream in reply to Misty2020]

I take no drugs for osteoporosis and have no other health issues which require drugs, so I'm fortunate in that respect.

[Misty2020 in reply to dcdream]

Good luck to you , I’m not planning on taking any drugs either.

[dcdream]

You too. I am continuing to research and try to find information that may change my mind about the meds but so far, I can't find current research to change my mind. Seems like the drug companies have little interest in changing the current options or developing new ones with less side effects. It's a great money maker for them, as it appears you're on meds for life.

[Pte82]

Misty2020, look into boron and annatto tocotrienol

ncbi.nlm.nih.gov/pmc/articl...

dougcookrd.com/annatto/

[Met00 in reply to Pte82]

I've seen you mention annatto tocotrienol a few times. Do you have a link to a recent, large-scale study that evidences this? I've seen a small-scale study done in 2018, which showed improvements in bone markers over the 6 week period of the study. It would need a much longer term study to show lasting benefit.

[Pte82 in reply to Met00]

Met00, the only long term I am aware of began in February 2014 and is scheduled to conclude in December 2023

clinicaltrials.gov/ct2/show...

[Met00 in reply to Pte82]

That's a strange one. It started in 2014 and said they would study the effect of 12 weeks of annatto tocotrienol. I wonder whether they're giving repeated 12 week supplementation, or whether they extended the study to see the impact of continual supplementation? I note that the participants didn't have osteoporosis at the start (t-scores 0.5 to -2.5, the latter being just on the cusp of osteoporosis). It's also still only a small study in terms of numbers of participants - 78, split into a high dose group, a low dose group and a placebo group.

[Misty2020 in reply to Pte82]

Boron I guess I Should add it to my vitamin regiment. How much do you take a day of the boron ?

[Pte82 in reply to Misty2020]

Misty2020, before using any supplement consult with your health care professional. My daily boron consumption is 3 mg with each meal. For further information on boron, Dr Jorge Flechas MD has a youtube video titled: Boron and Health - Osteoporosis Reversal, Arthritis, Testosterone, Mental Health.