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
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.
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!
What are your t-scores? And ask the question over on PMRGCAuk forum - loads of info over there including not using bisphosphonates.
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
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.
Would love to know about the bone density issue. That is encouraging that news.
K
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.
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.
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
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.
Just to be aware, my mum was on AA and now has Barret's Oesophagus - likely as a direct result.
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
Hi Pippa999,
Thank you for your feedback. We will be reviewing the factsheet in April 2020 and will make adjustments accordingly :).
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-...
It’s Mira Monday 
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