osteopenia

[Amilee]

Hi I have just been diagnosed with osteopenia after being on prednisone from August 2020,I was offered alendronic acid but refused as I’d heard so many horror stories.In 2022 I got my first dexa scan it showed some bone loss but I still thought I would be okay!Roll on July 2022 and now I’m osteopenic .Doctor told me I have to go on alendronic so I did! After only my second dose turned extremely ill abdominal pain,sore head ,dizziness,just felt terrible ,is this common should I persist although I don’t feel I can,is there anything else I can do or take? Also I’m now down to 2.25 mg of prednisone will that still be damaging my bones and is it possible to regain some bone density if I get off prednisone.

[TandemTime]

I was put on Binosto after have terrible stomach upsets ( could not leave the house!) with the standard weekly or daily alendronic acid. I have taken it twice now with either no or mild effects. It was recommended by my Rheumy.

[PMRpro Ambassador in reply to TandemTime]

How strange - because Binosto IS alendronic acid, just as an effervescent version.

[TandemTime in reply to PMRpro]

To quote the Rheumatologist letter to my GP.( after I said about my distressing symptoms of running to the bathroom with no notice...!)Alendronic acid is usually taken once per week. There is a buffered preparation of Alendronic acid (Binosto) taken once per week which is said to have favourable upper GI side effects compared to the traditional Alendronic acid.

Hope that helps. My sister in law thinks it's more expensive so quite rightly the NHS tries the standard version as some people are fine on it.

[PMRpro Ambassador in reply to TandemTime]

I'm sure it IS more expensive!! That's why they even hold back on risendronate which is also far better tolerated. I'm on annual infusions, not in the UK.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Just a tad more expensive -a pack of 4 -

Binosto -£11.60p

AA - £0.95p

[DorsetLady PMRGCAuk volunteer]

hi

Suggest you have a look at this post -

healthunlocked.com/pmrgcauk...

And contact ROS helpline for more info on alternatives -their nurses are excellent -

theros.org.uk

Actually osteopenia isn’t a diagnosis as such -just shows bone density is low -

Understanding Bone Density Test Results

1. A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.

2. A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. ...

3. A T-score of -2.5 or below is a diagnosis of osteoporosis. ...

4. The lower a person's T-score, the lower the bone density.

If your Z score is below -2, your bone density is lower than it should be for your age,

Put the AA in the cupboard for now whilst you look for alternatives.. but if it only happened on second dose not first did you do something different when/after taking?

[TandemTime in reply to DorsetLady]

Wish I had read your link before my Dexa scan the other day ! The paperwork never mentioned this to me...I do not take many tablets just one a day as trying to do it with food choices.."DEXA scans are usually outpatient procedures. There aren’t any special preparations needed, except to stop taking any calcium supplements for 24 hours before the test."

[PMRpro Ambassador in reply to TandemTime]

That is because if there are any calcium tablets in the gut that haven't been broken down in the digestive process and they get in the way of the beam, it can give a falsely high density!!

[Amilee in reply to DorsetLady]

no I did nothing different,I took it as prescribed on Sunday morning ,steadily got worse until Thursday ended up in bed cold shivering then sweating ,headache, bloating and cramps in lower abdomen !

[DorsetLady PMRGCAuk volunteer in reply to Amilee]

Okay thanks for update…sorry to hear you had those issues.

[PMRpro Ambassador]

When you say you are osteopeneic - what are the t-scores it quoted? For both scans. Osteopeneic is a wide range for almost normal to almost osteoporosis and all it means is your bone density isn't as high as it was at 30 years old. Almost ALL of us here were/are osteopeneic.

And take no more for now - first make an INFORMED decision. That means looking at the t-score and everything else. How big the change was, There are alternatives and the biggest problem with AA is if it causes reflux or gastric upset. It is also possible to increase your bone density without it as HeronNS 's experience showed. She'll be along later.

[Amilee]

thank you all for your help and advice,I will ask doctor for my results and make a decision, at 2.25mg is damage still being done or will it be very minimal?

[PMRpro Ambassador in reply to Amilee]

Most likely to be minimal - which is why the whole story needs to be told as to how much has changed since the first dexa and how close the osteopenia is to osteoporosis.

[HeronNS]

HI. I was told I had "low bone mass" which is the preferred name here for osteopenia, and because I was taking pred for PMR and along with a couple of other risk factors (age, a previous fracture - accident not fragility) they recommended I take AA, which I refused. The full story is here:

healthunlocked.com/pmrgcauk...

If there has been a significant change in your reading, and all else being equal (same hospital, hopefully same machine, unlikely but ideally same technician) it's a good idea to make sure you have been checked for "secondary causes of osteoporosis." Not all ills can be placed at the feet of pred!

osteoporosis.ca/medical-con...

I'll just add that I ended up taking pred for 8.5 years, most of them at a low dose varying between 2.5-1 as I made regular attempts to taper to zero.

[Amilee in reply to HeronNS]

Thank you for all the information it is very helpful, at this point I’ve decided to basically try all your advice, I truly think I could not tolerate alendronic and am not willing to chance the side effects, I’ve signed up to the gym and am trying to go 3 times a week! Wish me luck and thank you

[HeronNS in reply to Amilee]

As a PMR patient there is one thing you need to be careful about and that is repetitive exercises. We do tend to suffer some muscle weakening and therefore more prone to injury, So try to vary your routine, build up very slowly, and rely on exercises like swimming and walking. (Swimming isn't as directly helpful for bone density as you're not even bearing your own weight, but strengthening muscles is helpful, and - not necessarily for thee or me - sometimes the only real exercise some people can manage.)

We've had people on this forum who were basically disabled before treatment and after a while on pred and patient rehabilitation they've been able to run marathons or climb mountains, so you can see that the smaller goals most of us have are not beyond reach, but like everything else involved with PMR. pred, and bone health, patience is the key.

[HeronNS]

🍀 My personal opinion is the two most important things I've done is take Vitamin K2 and keep on being active - mostly walking!

[diana1998]

I've been told to take Risedronate by the fracture clinic which they say has fewer side effects than AA. I will try it after I've seen the dentist for a check up.

[HeronNS in reply to diana1998]

If you go on the bone health forums you will find you are not alone in this. It does seem to be much better. Makes you wonder why it isn't the go-to med rather than AA

[PMRpro Ambassador in reply to HeronNS]

'Cos it costs more silly 🤣 !!!!! And Fosamax/AA was the big brand name that ran an amazing sales campaign. What doctors learn at a particular stage of their training sticks VERY firmly and is very difficult to budge ...

[Missus835]

Hi there. I was first diagnosed with "osteopenia" about 2 or so years ago, but the rheumy had mistaken and it was actually osteoporosis (diagnosed about a year too late). I was unable to tolerate AA and so was eventually switched to an annual infusion of Zoledronic Acid. In that year and a bit, I had sustained 10 vertebral fractures in all. I'm due for a second infusion at this time. I was in such pain, that I went to the Emergency Dept. here in Halifax and they found the first 2 fractures (July 2023); had two vertebroplasties in September 2023, and so on from there. My last fracture was in April of this year. If you can't tolerate AA, please get on some alternative, before it develops into osteoporosis. Most of these meds have some rare, scary side effects, but it's all we're left with to help strengthen our bones. Get lots of Vitamin D3, K2 (MK7), and calcium (I try to get my calcium through my diet). I take 3000 units of D3 (which sounds like a lot, but blood work says it's optimum for me). You may not be able to get entirely off the Pred yet, but they say this is what caused the osteoporosis. I'm still at 6.5 mg Pred normally, but undergoing a flair at this time so I've upped it for a week or so. There is another forum in Health Unlocked called "Bone Health" which you may be interested in joining in addition to this amazing group. I hope you're able to get some help. Hugs...