Features: Hi Just wanted to know if anyone has... - LUPUS UK

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ajanjua profile image
10 Replies

Hi

Just wanted to know if anyone has suffered from multiple fractures, I ended up having a pelvic fracture and now have two fractured ribs. Is this due to lupus or the amount of medication that I am on

It all started after I had my second rixametib infusion

Thank you

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ajanjua profile image
ajanjua
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10 Replies
Marley1 profile image
Marley1

Hi ajanjau

I have over the years have had several stress fractures in my feet and broke my foot and cracked ribs from being cuddled to tight (yes just a cuddle)

But with being on steroids now constantly for 30 years this has a lot to do with my reason and I took steroids as a child for a period of about 3 years as well.

I know now I have to be a lot more aware of what I am doing. I have just got over a stress fracture in my foot but it was caused due to having an injury and having to use this leg more.

Hope this might help you a little :)

ajanjua profile image
ajanjua in reply to Marley1

Thanks Marley

It's really become difficult when I saw my Rheumatologist he couldn't explain why I had a fracture

Just wanted to know do you take any additional supplements I'm on Adcal Calcium tablets

Thanks

Barnclown profile image
Barnclown

Marley is right about long term prednisolone & predisposition to fractures.

The NHS rheumatology has monitored my bone density for many years. Because dexa bone density scans showed I have osteoporosis putting me at high risk of fractures, I'm given special ongoing treatment to improve my bone density. I hope your bone density is being assessed.

We are complex patients and our bones do need special attention due to both our immune dysfunction & the side effects of the meds used in treatment.

My rheumatology dept has a specialist metabolic bone unit which concentrates on patients like us. Does your rheumatology dept?

Am so sorry you're having these fractures...can only be very tough

🍀🍀🍀🍀 coco

ajanjua profile image
ajanjua in reply to Barnclown

Hi

No I have only had one bone density scan, I was diagnosed with lupus nephritis in January 2015 and been on steroids 10.5mg, can this much dose really effect my bones. The pain is quite unbearable and I have morphine patches to help but don't want to take time off work as I think they'll eventually get rid of me due to ill health. I work for the NHS and last time I spoke to my manager I was told that as I so many ongoing hospital appointment I have to take annual leave to attend. So if it's not one thing it's another

Barnclown profile image
Barnclown in reply to ajanjua

Oh gosh 😕 ...wish you weren't having to juggle all this. Not much consolation, but you're not alone (there are several NHS workers here)

Next time you see your gp &/or rheumy, I think you'd be totally justified in requesting a dexa bone density scan, based just on ticking these points:

a history of bone fractures

An incurable medical condition requiring a treatment plan including relatively high dose daily steroids long term

If you also have immediate family history of osteoporosis & bone fractures, that's another red flag

And if you're menopausal, this is another tick

The ace in your hand is that you won't be able to work + you will need care if you experience other Pelvic/leg fractures

Strictly speaking, I'd think you need a dexa bone density scan now simply to establish base line results. Then every 3 years you should have scans to estimate your rate of bone density loss. This is how the NHS monitored me

Being on Adcal isn't really necessarily the solution to this

Here is a link to the NHS Choices info on all this:

nhs.uk/Conditions/Osteoporo...

🍀🍀🍀🍀 coco

ajanjua profile image
ajanjua in reply to Barnclown

Thank you so much for your advice I will speak to them when I see my consultants again in march

Barnclown profile image
Barnclown in reply to ajanjua

👍👍👍👍

Please let us know how you get on

🍀😘 coco

1sam profile image
1sam in reply to ajanjua

Oh dear, I hope your pain dissappears soon.

My rheumy told me that long term use of steroids can cause osteoporosis, which leads to low bone density and getting easily fractured.

I hope they refer you to a specialist to see if this is your case or not ... and there are some treatments available for osteoporosis (Prolia and Boniva injections) so don't give up hope :)

Hoping you get the proper treatment and feel better. Gentle hug!

Samantha

Buffy14 profile image
Buffy14

Yes I had a broken pelvis , have had cracked ribs just from being hugged , I have been on steroids for my lupus for 15 years and now have osteoporosis as a result . You say you have had one bonescan , was that in 2015 ? They usually do them every few years routinely for people with lupus , there are lots of treatments for osteoporosis aswell as injections there are tablets to take , one a week or one you take once a month ibandronic , that's what I take .

ajanjua profile image
ajanjua in reply to Buffy14

Hi

Thank you so much for the advice I had a bone density scan in 2015 but I think what's surprised me is how quickly this has happened, from reading every ones post you have been diagnosed with lupus for a lot longer. Either way it's horrible as nothing seems to be working xx

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