Osteoporosis

[jamr]

I am 63, male and was diagnosed with osteo in Sept 2017 as my spine result was -2.9, hip -2.5 and wrist +0.3 (except I had no fragile fractures) . Was told to take a Prolia type medication while endocrinologist tested all endo systems to tumours etc. Despite a couple of readings not quite right, low DHEA, high SBGH, low Vit D, no other issues were apparent. As I had been on a restricted diet for 10 years due to food intolerance of gluten, lactose, fructose, candida and a few others, looked like I was not getting enough nutrition. Got some gut tests that showed I had parasite Blastocystis Hominis. Got this cleared by Mar 2019, radically added to my diet, got Vit D supplements, lot of exercise, avoided any Prolia type meds. Got dexa test in August 2021. Spine improved across various parts but overall still -2.9, hip now -2.3, and wrist +0.5. I estimated that gut issue still affected me till mid/late 2019 so an average guessed my dexa scores could have gone as low as -3.2 spine, -2.8 hip, wrist +0.1 around 2019, before my gut healed and body started reabsorbing nutrients. I have also gained 7kg in the past year (From 70kg to 77kg). My conclusion is that avoiding Prolia type treatment was the right thing to do until I had sorted parasite and nutrition. Not sure how long I can expect to improve my dexa scores for but hopefully get under - 2.5 on spine and hip under -2.0 in a couple of years. Anyone see any issues with my logic?

[fraid]

Whatever works for you! I avoided Prolia re hideous side effects,am just on Adcal.Never had dexa scan as can’t lie down or travel,have 6 known spinal fractures,never had further xrays re above,so I’m left guessing!Sounds like you’re doing well,keep going.X

[jamr in reply to fraid]

Thanks for sharing your story. I have heard bad stories about Prolia and have argued the difference between bone density and strength and understand they cannot measure strength only density and Prolia retains old bone, so density will increase but probably not strength as old bone becomes more brittle.

[Met00]

From what you report, I would say your scores have stayed more or less the same, once you allow for margin of error in Dexa scanning. However, that in itself is an achievement, as we usually lose about 1% bone density per year (for women that's from around age 40, with a greater rate of loss around the menopause, but I'm not sure when the loss starts with men, probably also age 40). You don't say what type of exercise you get, but if you want to build bone density, the most effective way is through weight-bearing exercise, as high impact as possible, as far as that's safe for you. I'm a similar age to you, with similar scores and no fractures. I exercise safely with weights and resistance bands, as well as doing daily heel drops and a small amount of hopping, jumping, star jumps etc, and regular walking. I started very carefully and built up gradually. It's also worth considering some additional supplements, in particular Vit K2, which helps send calcium to the bones, and most people also recommend magnesium if your stomach can tolerate it, and boron, which I've read helps with Vitamin D absorption.

[jamr in reply to Met00]

Thanks for your response Met00. My scores do indicate around 1% loss per year from 30, however I dont think this is inevitable, since the Z (my age range) score versus T (30 yr old) only differs by around 4-10% , which makes my Z scores relatively poor as well. I get a variety of exercise, sometimes not consistent week to week of light weights, running, paddling and some Isometric exercises with weights (static hold of a heavy weight on pulley etc). Between 2017-2019 i was haphazard with Vit D levels and only began K2 in 2019. his is why I think a test in 2019 would have shown worse Dexa results, so i interpret this to mean between 2019-2021 I have built bone. My concern in the possible error in the dexa. If i understand it correctly just a slight rotation of the leg etc will give a different result from one scan to the next. I have been taking 6mg supplement Boron daily for past couple of years, which has lowered my SHBG which improved my free testosterone. I did not realise it assisted Vit D levels and usage. There is a great NCBI study article called 'nothing boring about Boron'. I try to vary my diet as much as possible, I take natto to get K2, supplement D3 and take a Cal/Mag etc daily tab,

[Met00 in reply to jamr]

I don't think bone loss normally starts at age 30, so if you've been losing 1% average per year since then, that might explain why your z-scores have worsened relatively. It sounds like you're doing all the right things. I'm not sure, when you say you were advised to take a "Prolia type" medication, whether you mean you were offered Prolia itself? If so, that seems totally inappropriate for someone whose scores aren't bad and has never fractured! On the other hand, if you were offered Alendronic Acid or another oral bisphosphonate, that would make more sense, though I'm with you on there being no need for it!

[jamr in reply to Met00]

My GP showed me my dexa score and a prescription for Prolia, and a referal to an endo all in the same session. I knew nothing about osteo or medications etc but was not prepared to begin a series of jabs without some research.

[Met00 in reply to jamr]

Prolia isn't meant to be a first-line treatment! It's intended for severe osteoporosis, generally only when other drugs (usually bisphosphonates) have proved ineffective. It's also important to know before starting Prolia that there's a relay drug you can safely take if/when you stop Prolia, usually a bisphosphonate.

[jamr in reply to Met00]

Thanks, thats useful to know. I think his intentions were good but misguided. Its interesting to see the disconnect between medical practitioners and patients, while their role is difficult they seem to lose sight of their patients position. On the one hand we dont know the science but we can still have plenty of insight into our condition and with some research obtain good insight into how to treat ourselves in conjunction with medics.

[Kaarina in reply to jamr]

Goodness. Your GP is ill informed. Surely, when you see the endocrinologist he/she will be much more knowledgeable than your GP. Please do all the research you can. Knowledge is power.

[jamr in reply to Kaarina]

Thanks for that. I did see the endo and he suggested that moving straight onto Prolia was a good thing while he conducted extensive tests on my endo systems. Once again I resisted this and his tests did not pick any pathology in my endo systems, I am grateful for his knowledge in this. However neither tried to look deeper at the cause and wanted to treat the symptoms, so Prolia was offered.

[Kaarina in reply to jamr]

Good for you for resisting the Prolia.

[Posy-White]

Thanks for sharing your history jamr - I am female, same age and probably have OS due to food intolerances, also have a history with Prolia! - Is it known how you got the Blastocystis Hominis? I have no idea by now what I have and have not been tested for but one lives in hope of having a more normal diet!

Best Wishes

Posy White

[jamr in reply to Posy-White]

Pretty sure I picked up Blasto in contaminated ocean following floods that overflowed the sewage systems into the ocean. Got very sick within days, took herbals that seemed to clear this, however it crept back. Got stool tests showing major infestation, antibiotics, and next test showed clear. In last year I have gained around 6kg.

[Posy-White]

Thank you for your reply - I'm so pleased for you that you are able to start getting back to good health and a suitable weight.

Best Wishes

Posy White