Severe Osteoporosis - Understanding the scan report and treatment

[RAD23]

As a WF, age 60 - the last several years have seen some big health scares / diagnoses:

FYI: After a torn shoulder rotator cuff injury in Oct 2022 and PT making the pain worse, my orthopedic Dr finally suggested an MRI. Results did not have good news. He then suggested a surgical repair with "bone anchors". There was some discussion about my age and general discussion of old lady bones. A couple of months later, I asked my PCP about bone density at my next routine appt. She ordered a DEXA scan. Here are the results:

Lumbar spine: T-Score = -2.9 Z-Score = -1.5

Hip: T-Score = -2.2 Z-Score = -1.3

Femur Neck: T-Score = -4.5 Z-Score = -3.2

Wonder what the bone density in my shoulder area is???

My PCP did not explain anything - just ordered Alendronate 70 mg once a week. I looked up the medication - it appears to have some significant GI side effects. My PCP is aware of and basically indifferent to my ongoing GI issues. When I reminded her of all my GI problems, she told me not to take the med if I did not want to. When I asked for non oral alternatives - she mentioned only Prolia and referred me to a Rheumatologist. He looked at my scan and said the results were "very bad". He said my choices were:

Prolia once a month for 2 years (he does not recommend this)

Forteo - daily injection for 2 years or

Evenity - once a month for a year

He also told me to start taking calcium and Vit D daily. Not very kind to my touchy GI. There was no mention of diet or exercise. His office told me today it would take 2-4 weeks to find out if my insurance would cover any of these and at what cost. (That response seems crazy to me but know that calling my insurance directly does not yield reliable or accurate answers so I have no choice but to wait and use the time to do my own research.)

Seems like these drugs have some major side effects. I am looking for any and all input that you may have on your knowledge and experiences. I am not finding much on Z-scores BTW. What about the dental side effects? Since breaking your femur is one of the known side effects - I don't know what to think.

I have other major health issues (backstory) that are significant. Including CA diagnoses and a known pancreatic insufficiency problem that I now take pancreatic enzymes for. I wonder how long that problem existed - won't ever know. I do think that the nutritional deficits that problem caused more than likely contributed to the severity of the osteoporosis. No one seems concerned about what caused the osteoporosis or running any more tests. I had to ask for the bone density test. None of my Drs suggested it. These type of things bother me.

Help please!

Thanks,

RD

[MWZ3]

With those scores I’d try the natural route for a year or two. Walking is good. Some weights if able as well. Nutrition is a big one. Check your levels. Take vitamin K 2 which aims the calcium into the bones.

I’ve had the shoulder reconstruction too. First one was a mess as from an accident falling dow a very long staircase and ripping all four tendons from the bones.

There’s lots of detailed help on here with nutrition and exercise.

[CDreamer]

Hi and welcome - I’m pretty much at the same stage of osteoporosis with similar scores and got a lot of information from the ROS on exercise and nutrition. I take VitD with K2 as an oral spray, I couldn’t take Calcium and you can get enough from your diet. The ROS have a calculator for Calcium intake from food but I found it pretty useless as it included foods I never eat and none that I do which I know are high in Calcium but may help you.

theros.org.uk/

I’m sure the US has similar organisations? Seek them out.

I bought a Marodyne LIV device which I learned about on this forum. Prior to that and after 6 months of treatment with AA I stopped because like you, I decided that for me the affects were just too chancy so decided the nutritional/exercise route was for me preferable.

mybones.health/

Osteoporosis is going to affect just about everyone eventually and we can’t stop ageing so the most to hope for is to stop progression. There is no cause and no cure but self management and awareness. Have you fractured? I have had 2 fractures and that is how I found out I have osteoporosis as because of my age I was automatically referred to DXA scan. In the 10 years since the original scan I have not noticed much difference and my scores went from osteopenia range to just over the osteoporosis range.

I also learned that DXA scores are not that accurate and that there is a difference between strength of bone and structure so I am taking a REMS scan in September - the soonest I could get an appointment for scan with a consultation on nutrition with a specialist doctor. REMS is relatively new technology so still being evaluated but also shows structure as well as density which can be useful.

osteoscanuk.com/

I know these are all UK sites but should give enough info to signpost to possibilities to investigate in US.

I am hypermobile so my shoulder injury was from dislocation - shoulders are really tricky joints and I am avoiding surgery because a GA without prior treatment is incredibly risky for me so I am struggling along with physio and strength exercises.

[hjskev in reply to CDreamer]

Hi Do you know how much a REMS scan costs in the UK by any chance? I'm thinking of having one.

[Fruitandnutcase in reply to hjskev]

You’ll find his current prices on here. Ive had several scans done by Nick and I can definitely recommend him.

osteoscanuk.com/

[CDreamer in reply to Fruitandnutcase]

I think I paid £200

[Raleigh59 in reply to CDreamer]

how many seconds at a time or minutes at a time do you go in liv vibration machine

[CDreamer in reply to Raleigh59]

It’s recommended for 10 mins/day but that’s too much for me at one time so I started at 2 mins and now up to 5 but that’s because I have muscle weakness.

[Raleigh59 in reply to CDreamer]

I did 3 - 30 second intervals yesterday on it

[CDreamer in reply to Raleigh59]

What do you think?

[Raleigh59 in reply to CDreamer]

I liked it . I think it’s good but the machine is 10 miles from my house. If I go to that osteodensity place I could go three days per week but daily it’s too far. What do you think ? Do you do it 7 days per week ?

[CDreamer in reply to Raleigh59]

I bought one but probably only use it 2-3 times a week - I need to get more disciplined!

[CDreamer]

PS - dental affects - my excellent dentist warned me to have any dental work completed well before I started taking the drugs - thankfully my GP had warned me about that as a lot of the drugs can cause jaw bone to disintegrate - very rare, but not unknown.

[walk21]

Those scores look very odd. Osteoporosis is a systemic disease and does not affect odd bits of us. It's all our bones affected. There should not be such a difference between your neck of femur, which looks bad, and your spine and hip which are barely osteoporotic.

[Craftycreator in reply to walk21]

Hi my DEXA scan showed spine -5 but osteopaenia in my hips, -2.2 and -2.4. I was surprised at this but my consultant wasn’t surprised. Odd how different parts of the body can be so different. I’m considering a REMS scan like some of the other participants.

[jimister]

I have been on treatment for 5 years. 4 years of 6 monthly Prolia and now Zoledronic acid infusion. I suffer with Pancreas problems and GI issues since removal of my Gall bladder. I do feel these drugs have made my GI problems worse. I did have quite invasive dental surgery while on these drugs and was apprehensive about it but luckily it all went well, and I had no problems with healing. I'm definitely thinking of having an REMS scan to get a more accurate picture of the state of my bones as my dexa scores are bad. I hate being on these drugs.

[CloudyD]

Hi. For my experience - my recent Dexa results were worse than yours and had significantly worsened since last one, so for me the natural route alone didn't work.

Taking bisphosphonates now seems a lower risk of side effects than my risk for fracture (also recently fractured ankle which fractured from use, not a blow or fall). All medicines carry some side-effects which can sound very frightening and are obviously awful if they happen to you, but can be rare. It's a case of weighing up the genuine risk of you getting any of them with the risk of fracture.

It is discouraging when doctors don't want to fully talk about it. It makes us feel that they're not taking our own particular case into consideration.

I have Barrett's oesophagus and reflux so was worried about taking bisphosphonates. I've just started the treatment (1 pill weekly) so can't say how it's going long term, but I take the pill exactly as advised - on an empty stomach 1st thing in the morning, when I'm going to be upright for a good hour, and 1/2 hour before eating. So far it hasn't given me any problems. I have a follow up appointment with my doctor to review how I'm feeling after a month of taking them. I also have 5 yearly gastroscope and next one will be in 2 years. So I feel that it is being monitored for any side-effects in that area. I also have an appt in a few months with a rheumatologist with particular skills in osteoporosis to generally discuss treatments and monitoring.

Apparently bisphosphonates are only given for 5 years now and then treatment is changed. This is different from when my mother was given bisphosphonates for 15 years straight and got necrosis and cancer in jaw. Not sure if she also had major dental work done in that time, but highly likely that she did - which is a factor in developing jaw necrosis. My doctor wouldn't give me the treatment until the dentist had said there's no major work that needs to be done.

I'll get a LIV machine later (can't afford it right now), and hope that in 5 years' time I won't need further medication. In the meantime, I'll still be exercising, eating pro-bone diet and Vit D supplementation. I don't supplement with calcium as I get a lot in my diet and most vits etc are better if obtained from diet.

Hope our experiences help you decide what's best for you.

[Mavary]

hi! Just to say I was on Fosteo for two years and now I’m on Prolia for life. My bone scans were worse than yours and have come down quite a bit. I first had a spinal fracture,in 2013 which wasn’t recognised. And I broke my hand in aboutb2016. Then in 2018 I had two more spinal fractures, one of them putting me in hospital for twelve days. I was put on AlendronicAcid but only took one and was violently sick. So I was then given foreordained fo two years and now Prolia. I dint realise there was controversy about Prolia at the time. I came off the Forsteo and between that and taking Forsteo I had four more spinal fractures. My spine started off at -5.5 and is now 4.3. My hips were - 3.4 and is now - 2.6. I will be on Forsteo for the rest of my life. I’ve got a Cousin who’s been on them for about five or six years and is ok. I’ve been on them about four years. None of us have hade any problems and I am touching wood! 🤣

[Raleigh59]

We have many things in common. I too am a 60 year old WF. I live in Raleigh NC .

I have scholiosis so my results might not be accurate.

I never had had a dexa and had my first with almost the same but worse results as you.

-4.7 lumbar .63 BMD

-3.4 left neck femur .57 BMD

-3.1 right neck femur .61 BMD

I still can’t make sense of two things can .63 lumbar = such an extreme t score ?

If when BMD is higher then t score is worse, why in my femurs: my higher BMD in femur yield a better t score? And my better/ lower BMD gives me the worse t score?

Very confused and at this point waiting to see my new endocrinologist.

Please anyone who can make sense of all of this please respond?

I went on living bone vitamin and now planning to buy bone and marrow.

I too cannot take most of the OP medicines with my stomach. And I don’t want the risks of the OP medicines bc if we should have a dental problem or broken bones those medicine make our bones brittle and harder to heal. Those medicines are for people who never break anything or never have a dental problem again in their lives. My mom at 88 fell and broke her hip and healed very well bc she had never been on medicine. I don’t think comparing us to a 20 year old to get a t score is fair when people do age - it’s called aging. So a fracture risk is if one falls at 88 and breaks a bone compared to a 20 year old who takes the same fall and doesn’t break a bone. How is a 68 year difference even a comparison at all !!! The OP world should only look at z scores to be fair it seems.

Donna G

[Cappuccinobaby]

Get your calcium vit d and parathyroid hormones check via your blood. Hyperparathyroidism is a cause of osteoporosis if left.......x

[FJMG]

I have major GI issues and hiatal hernia. I'm on zolendrate infusion once a year. Haven't had any side effects.

[Hidden]

HI RAD23, You could call the Specialist Nurse helpline on their free phone number to discuss the pro's and cons. 0808 800 0035

[carport]

A REMS scan costs £200 in the UK. I have just booked one for September in Winchester as the mobile clinic there on two dates

[Fruitandnutcase in reply to carport]

Wow it hasn’t half gone up since I booked and paid for my last one! Ouch!

[KY1960]

see if your insurance pays for reclast.