Osteoporosis: Hi, Am in a Lupus flare at the... - LUPUS UK

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Osteoporosis

babssara profile image
21 Replies

Hi,

Am in a Lupus flare at the moment so not too bright. Just found out from my dexa scan that I have osteoporisis. GP wants me to start alendronic acid. I have heard really bad things about this drug. I am on so many drugs at the moment and I don't really want to add another to the mix. Has anyone any thoughts, advice to give me?

Lots of love to all you sufferers.

Babs

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babssara
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21 Replies

Hi, sorry to hear of your OP diagnosis. I can suggest 2 things, first take a look at the 'bone health' group on here. healthunlocked.com/bonehealth and read some of the post on there. Second, visit theros.org.uk/ and ring the helpline. Free osteoporosis Helpline

0808 800 0035

nurses@theros.org.uk

"Call our Helpline for tailored information about osteoporosis and bone health.

Our friendly team of specialist nurses are here to help anyone who wishes to contact the Helpline. You may have osteoporosis, or be a friend or family member of someone who does. Health and social care professionals are also invited to get in touch.

The service is provided by nurses with specialist knowledge of osteoporosis and bone health. Our nurses are supported by a group of scientific and medical advisers, to ensure the information they give is accurate, independent and up-to-date.

Our osteoporosis Helpline is free from UK landines, mobiles and call boxes. You do not need to be a member of the charity to use this service.

How to contact the Helpline

You can contact our specialist nurses in one of three ways:

Call 0808 800 0035 - free from all UK landlines, mobiles and call boxes

Email nurses@theros.org.uk for a reply within 5 working days

Write to the nurses for a reply within 7 working days: Helpline, Royal Osteoporosis Society, Camerton, Bath, BA2 0PJ

Our nurses are here to take your call between 09:00 and 17:00, Monday to Friday, with the exception of Bank Holidays and Christmas closure. Occasionally, the Helpline is closed for training."

Hope this helps.

babssara profile image
babssara in reply to

Many thanks for your reply. I will certainly have a look at the links.

Babs

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Babssara,

Sorry to hear that you're experiencing a flare at the moment.

We published a factsheet on 'LUPUS: Bone health and Osteoporosis', the factsheet discusses alendronic acid as a potential treatment. To read the factsheet, visit lupusuk.org.uk/wp-content/u...

Best wishes!

PMRpro profile image
PMRpro

What are your t-scores? And ask the question over on PMRGCAuk forum - loads of info over there including not using bisphosphonates.

babssara profile image
babssara

Hi PMRpro

No idea what my t-scores are (?). Hopefully I can get an appointment with the doc tomorrow . I just got a letter to say my dexa came back as oseoporosis and I need medication, so book a non urgent appointment. I only assume its alendronic acid, could be wrong. But I have heard so much negative opinions about this drug, I would like to go in forwarned and forarmed. I will go on the PMR and look up all the info on this drug. How does PMR come into alendronic acid?

Babs x

PMRpro profile image
PMRpro in reply to babssara

Because they allege pred always causes reduced bone density (it doesn't but that is another story) so try to force us to take AA. It is not unknown for doctors to over-egg the results and claim they are far worse than they actually are and they are often reluctant to do dexascans as well.

KayHimm profile image
KayHimm in reply to PMRpro

Would love to know about the bone density issue. That is encouraging that news.

K

PMRpro profile image
PMRpro in reply to KayHimm

I had been on pred at above 10mg for most of 7 years when I had my last scan - there wa almost no change in my bone density. I'm not the only one with a similar tale to tell.

KayHimm profile image
KayHimm in reply to PMRpro

Great news.

MAG68 profile image
MAG68 in reply to PMRpro

My Aunt has severe osteoporosis likely for which steroids are likely to be the main reason. Perhaps it depends on dose, but there is a definite link.

PMRpro profile image
PMRpro in reply to MAG68

Figures quoted in the USA say 40% of patients on pred develop osteoporosis. However - 50% of the general population will develop osteoporosis at some time in their life.

babssara profile image
babssara in reply to PMRpro

Thanks PMRpro

x

MAG68 profile image
MAG68 in reply to PMRpro

It is true that many will develop osteoporosis, but hers is extremely severe and happened early. Medication is a double edged sword and is a difficult balance to find.

mandypops profile image
mandypops

Found out I have osteopenia after a dexa scan earlier this year. I’ve been seeing a rheumatologist privately for about 6 years and had about 10 steroid injections over that time to control flare-ups. I was told the bone pain which I had pretty much everywhere was down to the lupus, and it was me, not my consultant who requested the scan. Thank goodness I did !

I now take Intracal ( calcium and magnesium orotate which is more readily absorbed by the body ) along with vitamin K and a 3000 IU vitamin D.

The difference in my symptoms is unbelievable, I now have very little bone pain, feel much brighter and stronger , and also some other symptoms I put down to lupus have disappeared. I

no longer think about needing the steroid. If I hadn’t had the scan I would probably have ended up with osteoporosis, as it is I’m told osteopenia can be reversed with calcium.

At 58 years old I feel I should have been offered a bone scan much earlier, especially with the extreme bone pain I mentioned to my consultant every time.

I also control my diet ( started with paleo, but more relaxed now, but not much gluten, no red meat and lots of vegetables )

So please if any of you have bone pain , and have not been offered a bone scan, make sure you request one ! X

PMRpro profile image
PMRpro in reply to mandypops

Osteopenia shouldn't cause bone pain - but low vit D could ...

babssara profile image
babssara in reply to PMRpro

HI

i am on Vit D capsules twice a month?

Babs

Nmartinez15 profile image
Nmartinez15

My mother have that injection every 6 months. She has advanced osteoporosis and she gets very sick for a week and then she is doing better. You need to take calcium with magnesium and vitamin D.

MAG68 profile image
MAG68

Just to be aware, my mum was on AA and now has Barret's Oesophagus - likely as a direct result.

babssara profile image
babssara

Thanks again to you all. I have read and digested your very informative responses. As they say forearmed is forwarned.

Thanks everyone who has replied

Babs x

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Pippa999,

Thank you for your feedback. We will be reviewing the factsheet in April 2020 and will make adjustments accordingly :).

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Hidden ,

Thank you for your comment and as Chanpreet_Walia mentioned, this can be considered when revising the publication. It is worth noting here that osteonecrosis of the jaw is a very rare potential side effect of this type of treatment and will be carefully considered against the potential benefit of the medication by the prescribing doctor. More information about this can be found in this very helpful factsheet from the National Osteoporosis Society - theros.org.uk/media/1593/k-...

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