Alendronic Acid

[Deegraham]

My son has been told to take this weekly to help protect his bones ( he has SLE and lupus nephritis so on prednisolone) . I don't like the look of all the side effects. Is anyone else on this?? What's your thoughts.

Thankyou!

[tiredmum]

Good morning,

I am on prednisolone for SLE and have been confirmed to have osteoporosis.

I take Alendronic weekly and so far have had no side effects at all.

Nic

[Deegraham in reply to tiredmum]

Thanks Nic. How quickly did osteoporosis develop after you were diagnosed with SLE?

[tiredmum in reply to Deegraham]

It was confirmed last year after about 6 years on steroids.

[Deegraham in reply to tiredmum]

I'm sorry to hear this. What a shame they never anticipated this and started you on it earlier. Maybe I should be thankful that Fin is on this only 4 weeks after diagnosis rather than being sceptical about it.

[PMRpro]

Have they done a dexascan to check his bone density? They should before deciding he needs AA immediately. The first approach in under 65s should be calcium and vit D supplements, AA should only be started after checking both calcium and vit D levels as unless they are good the AA won't work at all. I'm not sure how the nephritis might affect the calcium supplementation so that is up to the experts but AA should not be taken for more than 5 years at a time, preferably 3 years, to avoid long term side effects with the bisphosphonates.

I have been on pred for over 8 years - after over 7 years my bone density had hardly changed without ever taking AA, just calcium and vit D but it is important to have a baseline reading to see what happens over time.

[Deegraham in reply to PMRpro]

Thankyou for that. No dex scan. It was renal consultant that started him on it. Seeing rheumatology on Monday so will chat to them about it.

[Hidden]

Hi,

I would ask for a DEXA ( for a baseline ) and also give the national oesteoporosis helpline a phone as they are the experts.

nos.org.uk

I know that Alendronic acid needs to be used with caution in women of childbearing potential. I would want to know that there is evidence that AA can actually prevent oesteoporosis. Is there anything in the recently published evidence based Lupus guidelines about it use?

[Hidden in reply to Hidden]

Found this as well, it appears that there isn't the same evidence base in men.

sps.nhs.uk/wp-content/uploa...

[PMRpro in reply to Hidden]

I can't say that would persuade me to take AA if I was a bloke...

[Hidden]

The recent evidence based guidelines for preventing and treating osteoporosis.

There are sections on steroid induced oesteoporosis and men.

sheffield.ac.uk/NOGG/NOGG%2...

I suppose the question is are your son's kidneys " leaking " protein and calcium which may increase his risk factors.

Weight bearing exercise, a good diet, optimum Vit D levels ( I would make sure they have checked them ) and calcium levels are important. There is also some interest in Vit K2 as prevention.

[Deegraham in reply to Hidden]

Thankyou so much for all this help! Will look more in detail when at home and not in tesco!!. He does have protein and blood leaking from his kidneys at the moment.

[Deegraham in reply to Hidden]

Hello again!

Iread your links and phoned the helpline too. There are very few adolescents on alendronic acid and it really should be given to those high risk of fractures. He is already on adcal and is reducing prednisolone quickly so rheumatology yest said take him off it. We have renal today so they may think differently!! It's not good having different consultants telling us different things. I guess this is what we have to look forward to with this diseases.....

Thanks so much for the links because she definitely respected the fact that I read the NOGG guidelines and could quote fron them!!

[Hidden in reply to Deegraham]

Glad to hear they were helpful. I suspect that renal were opting for a belt and braces approach without looking at whether there is any actual evidence that AA prevents oesteoporosis is adolescent males!

I am part of the helpline team at Vasculitis UK and spend a lot of time sending people evidence based guidelines. When you have something rare it's important to be as expert as you can in the disease and form a partnership with your Consultant to get the best care possible.

[Deegraham in reply to Hidden]

It's interesting because the SLE guidelines don't make recommendations for the side effects of drugs administered for SLE so they say to look elsewhere for guidance and evidence for such things as osteoporosis. I guess they can't cover everything! Good on you for being part of the helpline. It's people like you that help and empower newbies like me when faced with all this.

[Dibage]

Hi guys I just saw my physician as I now developed backout even when I'm seating.It starts with bouts of diziness at time I loose balance as i work.My fatigue is still there most the time.At times I forced to sleep for almost the whole day waking up when eating.My face is also severely affected by the butterfly rash.Any advise on what to apply.My physician said the tremors cud be side effects of steroids as I take10mg of prednison daily nivaquine 200mg daily

[Wizz13]

Hi Dee, my renal consultant also started me on alendronic acid 3 weeks ago.

They didnt do any dex scan for me either, and i am of childbearing age so i may bring this up when i see both rheum and renal this week.

Hope Fin is getting on ok x