Scared!! Osteoporosis at 36 :(

[sophie]

Hi, I have just found out from my DEXA scan that I now have osteoporosis. My t scores are -2.5 at the spine and femoral neck. I am waiting for an appointment to go and see a specialist to discuss treatment but in the meantime I am terrified.

It is literally stopping me from doing anything! Before the diagnosis I completed 90 days of P90X (a high intensity workout regime including cardio, weight training and yoga, I did this for an hour a day, 6 days a week) now I am too scared to do it anymore in case something snaps!!

I also ride horses, should I stop this now in case I fall off?

I have not fractured any bone in my body apart from a finger and a toe (both years ago from horse related injuries). I have fallen over recently but have not broken anything.

I was on pred for 2 years back when I was 18, could this be the cause or is it more likely to be an absorption issue? I don't, as of yet, take calcium or vit d supplements, will these help improve bone density?

I have been scaring myself further by reading all of the side effects of bisphosphonates!

Is there anyone who has been able to increase their bone density without going on these medications? if so please tell me how. Also, if anyone else has this how do you manage and does the fear get less??

I really would appreciate any feedback.

 

[UnXmas]

I've had osteoporosis since I was a child. It's called "idiopathic" in my case - no known cause. It's probably not been helped by my being underweight a lot of my life, and by taking prednisone. You were on pred for a long time, so that could well be the cause in your case.

If it's any consolation, I've never broken anything. Don't take silly risks, but don't stop living your life for it either.

Apparently bone density can be improved, or you can at least minimise futurre bone loss (even if you don't take pred again, everyone's bone density decreases naturally as they age). Taking vitamin D and calcium can help. Maintaining a healthy weight can help. Doing weight-bearing exercise like walking can help also.

 

[SarahD]

Try not to panic! I have osteopeonia diagnosed when I was 25. In my case I had been on low dose steroids for several years and had low calcium intake in my diet, so both were contributing factors. I now take calcium and vitamin D tablets 6 days a week and a bisphosphonate (alendronic acid) on the 7th day. I've had no trouble from either meds. I'm due another DEXA scan in four years to assess what progress has been made from taking the bisphosphonates.

Exercise is really good for maintaining and increasing bone density. I wasn't advised to avoid exercise, and I still go running and cycling on a semi-regular basis. Walking is also really good, as it's relatively low impact. Bone density can be increased by doing weight bearing exercise, which includes walking, dancing etc. What you want to aim for is low impact weight bearing exercise, as this will help build bone density without putting too much strain on your bones.

The main thing is you've caught the osteoporosis and can now actively do something about it to change your prognosis. It doesn't have to be a life sentence, and it shouldn't stop you from enjoying the things you love, you just need to be a little more careful about some things.

 

[shamrock15]

I had bone density loss due to prednisone about 15 years ago. Mine was about 10%. I actually recovered all, verified by scan, within a year through diet alone. I know not everyone is able to tolerate dairy, but mine was done through eating cheese, milk and ice cream. No meds - couldn't tolerate the combination that they wanted.

 

[2thFairy]

Exercise is GOOD for osteoporosis. Don't stop!

 

[Grumpy1]

I was diagnosed with osteoporosis when I was 29 after I had a hysterectomy and 7 major surgeries in 18 months. I built bone density in my hips and lower back (which were my danger zone) for the first 2 years after diagnosis they think because I was active, swimming, walking, hiking, yard work, along with a change of diet, foods that are high in nutrients- fresh fruit and veggies, you can add milk and yogurt to your diet but unless you add an astronomical amount the calcium intake is minimal without a supplement. I have had 2 minor incidents in 24 years. Both incidents were falls one on ice and one on concrete sidewalk outside of work in the rain neither resulted in breaks, one resulted in a hairline fracture of one wrist and the other caused my breast bones to move and pop the cartilage out so I had a convex area in the solar plexus for a bit until it relaxed enough that it could be popped back in by my doctor. You do have to be careful and I am now on 2000mg of Vit D and 1800mg of calcium a day; but follow your doctor's advice and live your life and you will be fine. It is a bit of a shock to realize that your not invincible or unbreakable but you'll manage with care and support.

 

[nogutsnoglory]

I'm younger than you and have osteoperosis from steroids. Gentle weight bearing exercise can help. Maybe goto the osteoperosis Fdn site for tips on safe movements. Calcium and vitamin D is very important and you may want to consider vitamin k2.

Many of the osteoperosis meds can be hard on your stomach. Reclast is an annual infusion and maybe that's the best option to ask the specialist about since it bypasses the gut.

 

[t-bone]

... searched and found nothing, so resurrecting an old thread that had some good information

I requested a DeXA awhile back, and I finally got it done

I wanted this imaging set because of all of the hysteresis in my CBC blood labs.
Pretty crazy high (but steady) hemoglobin and hemocrit, with huge swings in the other components


Turns out it was a good image set, and very good timing !


All of the numbers are ... not encouraging ...
but the left femoral neck were the worst
BMD 0.683 g/cm2
-3.o T-score std
-2.1 Z-score std

... these results suggest i need to speak to someone in one clinic or another

Is this a question for a blood disorders doc (re; polysythemia), or an ortho specialist, or ??? clinic

I've been tracking vitamin d for awhile for other reasons
Vitamin D-25 hydroxy (preferred) was steady in the ~50's ng/ml range (tested ~two years apart )
My level was 111 ng/ml at the last test (fasting blood draw, done same day as DXA, approximately 30 minutes after that x-ray image scan )

I added an additional d3 daily supplement awhile back because I had to a budesonide bridge to a 28 day stelera cycle from 56 days
..when the vitamin d level lab result came in first,... I was like oops. better back that off ...

Then the DeXA radiology report came back with sub optimal findings, (and a "helpful himt " about checking to be sure the d levels werent low )

other than a ... lol ... wtf ... im not sure what to think or who to talk to about this

Could the DeXA have effected the nutritional lab work?

Any ideas?

Thanks for reading, and any advice is welcome

 

[Pangolin]

Vitamin K2 supplements may reduce osteoporosis.

 

[momsa]

On what basis are you saying this? We asked the endocrinologist about this, and he wasn't enthusiastic about the Vitamin K2, but have you seen studies that show otherwise?

 

[Pangolin]

I've personally found that vitamin k2 supplementation causes a certain tooth pain to stop, which I believe is related to the vitamin k2 causing increased mineralization of the teeth, which is an effect it also has in other bones.

Here's an article on k2 and osteoporosis: https://melioguide.com/osteoporosis-nutrition/vitamin-k2-for-osteoporosis/