Spine -5.4

[JulieSC]

Hi All. Just learned that my spine t-score is down to -5.4. Anyone else have BMD that low? Any tips?

First dx’d several years ago; put on Fosamax but my compliance was inconsistent. New doctor said she would have prescribed different drug from beginning. Had been -4.1 but done on different machine so can’t really compare

I’ve had Two vertebral fractures, in January and March this year, both due to slip and (hard) falls but MD said my bone fragility likely contributed. Am now 5’7” after having been 5’10”.

The new BMD very distressing. Will go on Evenity assuming insurance approval. Can’t take prolia and similar due to my primary hyperparathyroidism (which MD determined is not the cause of my osteoporosis).

Have been walking and doing PT since fractures and will continue.

I’m currently 66 years old, white female. Appreciate any ideas. Thanks

[HeronNS]

Have you seen a specialist about possible causes for your osteoporosis? The hyperparathyroidism seems to have two faces.

ncbi.nlm.nih.gov/pubmed/980...

I would be leery of Evenity. It is a new drug so we have absolutely no idea what longterm side effects may be and as it is being brought to us by the same company which has gifted us with Prolia and its rebound osteoporosis if the drug is stopped I would be even more nervous of taking it.

I know because of your bone situation you really must do something. How did your doctor determine the hyperparathyroidism was not the cause of your osteoporosis?

Some reading for you

americanbonehealth.org/bone...

healio.com/endocrinology/bo...

healthunlocked.com/pmrgcauk...

[sweetsusie]

I, too, have osteoporosis and am 71 years old. I tried a couple of the bone meds, but ended up deciding to NEVER take any of them again. I researched them and the side effects are worse than the threat of fractures, I believe. This new one that your doctor is recommending has many of the same side effects as Prolia (which is one of the worst that is prescribed, I believe). Be careful..please research any bone med your doctor wants you to take. I'll take my chances with fractures...oh..and if you can talk him into prescribing HRT (Hormone Replacement Therapy), that would be better than the bone meds. I did..and m y doctor now has me on this therapy, because those hormones will build back bones. Check out the European website of Healthunlocked for more information about osteoporosis...good luck...be careful!!!

[Sweetestthing in reply to sweetsusie]

What are the side effects of HRT?

[Karenjaninaz in reply to Sweetestthing]

I took Regular HRT then tried "bioidentical"-No such animal; I ended up with bilateral breast cancer and before that pre-cancerous uterus.

[faridaro in reply to Karenjaninaz]

Karen,Can you please tell more about the regular HRT and bioidentical which you tried? Sorry that you developed such serious side effects. Were you using cream or pills and for how long?

A few months ago I started hormone treatment using cream and would very much appreciate your information.

[Karenjaninaz in reply to faridaro]

I took either pills or cream for 8 years. I developed estrogen receptor bilateral breast cancer and precancerous post menopausal bleeding.

I reversed my osteoporosis, even while talking prednisone, with a micronutrient test protocol used in Canada. It was called the COMB protocol. It uses Vit K2, Vit D2,fish oil, dietary calcium and strontium citrate. I only used half of the recommended dose of strontium citrate and still reversed it to osteopenia in 11/2 years. On another of my posts I put the links.

[Karenjaninaz in reply to faridaro]

I add that there is no such thing as “bio identical “. A hormone is a hormone- whether it’s a cream or a pill. There are certain receptor sites in the body to such hormones. This “bio identical” label is a selling point. The chemical structure of a hormone determines the action on the body’s receptor sites.If the chemical structure is correct it will have the correct action no matter the selling label. One label doesn’t make it safer than the other.

[faridaro in reply to Karenjaninaz]

Thank you Karen for sharing your experience with hormones and so sorry to hear about the breast cancer - will have to discuss this with the doctor. I also started COMB protocol about 6 months ago, so not sure yet if there is any improvement but others' results in response to one of your posts are encouraging.

Best regards!

[faridaro in reply to sweetsusie]

Can you please give us an update on your progress with HRT? Would very much appreciate any details!

[sweetsusie in reply to faridaro]

Yes, faridaro: I'm now off the HRT permanently...in December 2020 I had a heart attack, so no more hormones for me. I was really surprised because there is absolutely NOT HEART DISEASE in my family...so I guess this is fair warning...I was wrong about the HRT apparently....but still believe that the bone meds are terrible, and I will not take them!

[faridaro in reply to sweetsusie]

Sorry you had a heart attack and thank you for the warning. Hope you are staying well and strong. Best regards!

[HeronNS in reply to faridaro]

If you read my reply (top of the thread) to the original post two years ago there are some links there which may help. My story is one of the links and it in turn includes the link to the COMB study which Karenjaninaz mentions (look for hindawi in the list of websites).

[faridaro in reply to HeronNS]

Thank you for the links in your response 2 years ago - valuable information! I also checked out your post "My "Osteoporosis" Journey" from 3 years ago and can tell you've done a lot of research.Best regards!

[Mark_ABH]

Hi Julie, thanks for sharing. Here is some more information about Evenity; the highlighted warning involves risk of heart attack and stroke. Have you had any heart problems? americanbonehealth.org/medi...

I'd encourage you to try American Bone Health's Fracture Risk Calculator to assess your risk of fractures beyond your T-score. americanbonehealth.org/calc...

[HeronNS]

Looks like Julie only ever made this one post 2 years ago and no other replies or posts.