Alendronic Acid : I have just been given... - Vasculitis UK

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Alendronic Acid

juli-pa profile image
22 Replies

I have just been given alendronic acid by my GP to protect my bones. I have been reading some of the side effects and not sure whether to start this medication. I also read on nhs website that may need advice before taking if you have kidney problems. Does anyone else take this medication? I am thinking of talking to my consultant before use. Tia

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juli-pa profile image
juli-pa
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22 Replies
piglette profile image
piglette

My GP has been going on for ages for me to take AA as it seems to be part on his tick off list. Have you had a Dexascan which measures your bone density? Personally I would not take AA until it was proved to me I need it.

juli-pa profile image
juli-pa in reply to piglette

yes I have had a Dexascan and my consultant said to ask my GP for HRt but because of my age the GP doesn’t believe I will benefit from this. Just reading side effects of this drug freaked me out a bit.

piglette profile image
piglette in reply to juli-pa

If you have osteoporosis it is probably a good idea to take a bisphosphonate such as Alendronic Acid, but in my opinion I don’t think it should be taken ‘just in case’, which is what my GP is advocating. What were the results of your Dexascan, I hope you don’t mind me asking?

Mabel8 profile image
Mabel8 in reply to piglette

long term use of steroids will require some form of bone protection. I was on weekly Alendronic Acid for a couple of years may be more and was them put on a monthly version. The side affects were still a problem so was then offered an annual infusion of Zolendronic Acid. Perfect, and after 4 years still no side affects. No issues either with KFT’s. Maybe your dr could refer you for this type of Alendronic Acid

piglette profile image
piglette in reply to Mabel8

That is absolute rubbish whoever told you that long term steroids must have some form of bone protection. I have been on steroids for over six years with no form of bone protection. My Dexascan shows a T Score of +2.7 and a Z score of +5.1. It is totally wrong that doctors are assuming that your bone density reduces. Some doctors at UCL have been doing research on bisphosphonates and have found that we should be more careful in using them.

Mabel8 profile image
Mabel8 in reply to piglette

I have been on steroids for about 20 years and Alendronic Acid for about 3/4 years and had normal DEXA scans until the last one 6 months ago which had just dropped out of the normal range. Do you have research evidence that long term steroid treatment does not affect/thin the bone density? I would love to see it and would obviously stand corrected

Mabel8 profile image
Mabel8 in reply to Mabel8

Steroids have major effects on how the body uses calcium and vitamin D to build bones. Steroids can lead to bone loss, osteoporosis, and broken bones. When steroid medications are used in high doses, bone loss can happen rapidly.

health.ny.gov › publica...

What You Should Know About Steroids and Osteoporosis

piglette profile image
piglette in reply to Mabel8

I am a living example. I think PMRPro would tell you the same thing.

Mabel8 profile image
Mabel8 in reply to piglette

I forgot to mention that I was diagnosed with early onset osteoporosis so maybe that’s why I had regular DEXA scans and commenced on AA then later infusions from which I don’t experience any side affects. Maybe others do? The reply I posted above was a piece of research I copied and pasted to this site. My sister was diagnosed with rheumatoid arthritis in her mid 20’s and was on bucket loads of medication. Sadly she was not prescribed any type of bone protection and sadly 20 years later her bones were crumbling badly. She sadly gave up on life because of the pain caused by her crumbling spine etc and died prematurely

piglette profile image
piglette in reply to Mabel8

osteoporosis is just horrible. Poor thing. I was a trustee of Arthritis Care and so knew quite a lot of people with RA, some became very good friends.

juli-pa profile image
juli-pa

I can’t remember off top of my head -1 rings a bell. Will check through my hospital letters. Thank you .

Chipper03 profile image
Chipper03

When I was on very high doses of steroids, I did take alendronic acid for three months. You are right to treat with caution, but it can be the way to protect your bones. My mother took it for 10 years, many years ago, and this had a very negative effect on her jaw which has affected dentistry. I don’t think they put people on it for long periods any more. My dentist still mentions that I’ve had it in the past, and checks they haven’t put me back on it. I’m not sorry I took it for those three months, I still only have osteopenia at my most recent dexascan.

Roughley17 profile image
Roughley17

Hi, I've been taking AA for 3 years. So far, I've had no ill effects. Hopefully it stays that way!

Mooka profile image
Mooka

I took it for a few years when I was on steroids. It was the first thing I dropped when I stopped taking steroids. I would ask my consultant before taking them as they should have put you on them if deemed necessary especially after your dexa scan. It used to be routine after induction therapy. My GP put me back on calcium tablets which sent my calcium levels up so my consultant stopped them. Do you have a specialist nurse you could call and ask?

juli-pa profile image
juli-pa in reply to Mooka

Hi Mooka, thank you for your reply. I have read all the other replies and I have decided to speak with my consultant before taking this drug. I have GPA with kidney involvement and it did state to get advice if you have kidney issues.

jgold profile image
jgold

My vasculitis consultant ordered a Dexascan after a lengthy period on steroids. It showed osteopeonia so he prescribed Alendronic Acid for several years until further scans showed that bone strength had increased, He also changed my vasculitis treatment to largely remove the need for steroids. The AA gave no side effects. However, as a matter of principle, I would now never take any long-term treatment from a GP without first clearing it with the vasculitis consultant. I have always told the GP that I would make this check and they have never objected.

EGPAGuy profile image
EGPAGuy

I have been taking AA for 3 years because of steroids. No issues to date for me

louise112 profile image
louise112

I have been taking it for 4 years because of steroids and I have never had any side effects.

Rugby_errol profile image
Rugby_errol

hi juli-pa, if you have any worries then bring them up with the consultant or a pharmacist. Virtually all drugs have some side effects, not all will affect you. Plus the risk of side effects may be outweighed by the benefit of taking the drug.

I took alendronic acid whilst on high dose pred, but did follow the empty stomach and no eating for 30 mins and staying upright rules; I didn’t have any side effects. My dentist was interested to know I was on it!!!

Chat about your concerns, but also weigh up the risks.

juli-pa profile image
juli-pa

Thank you. Was the jaw and teeth issue and also on nhs website mentioned if you had kidney problems to get advice before taking. I do have kidney issues and my GP has prescribed me drugs before when my eyes were bad and MOorfields told me to bin them. Before diagnosis they kept giving me naproxen and when I went an and E with a kidney infection was also told to bin them. I have a consultation on the 31st July with my renal consultant so I think I will discuss with him before taking.

MoominMomma profile image
MoominMomma

Hi, I was taking alendronic acid tablets as am on long term steroids & a lower bone density but I suffer with oesophageal issues so after years of taking them, my latest rheumy (& the best so far!) swapped me to the denosumab injection. The injection is every six months & have not noticed any side effects. I had to check with my dentist to make sure that my teeth were ok first & my dentist said that in his opinion, the denosumab was the better option.

However, my neighbour works in a care home & some of the residents are on alendronic without any issues.

Voice your concerns to your consultant, gp & the drs that you see.

Good luck 😌

roshough profile image
roshough

Prednisone doesn't only cause low bone density but alters the structure and strength of the bone...the connective tissue is involved just like it causes thin skin and easy bruising. Once bone is lost of damaged, nothing can put the bone bridges back. Much better to prevent rather than treat osteoporosis. Those who say they have not suffered ....maybe will do in the future and it just isnt worth the risk of terrible pain and deformity. My mother and 3 sisters all have osteoporosis with significant spinal fractures, and although my bone denisty was "normal", I requested and tool risedronate (an alternative to AA) for 15 years, with no side effects and after a "bisphosphonate holiday" am back on it now. Both my sisters are no longer responding to bisphosphates and are needing 3rd line drugs to try to prevent their fractures recurring. It's really worth finding a bone-protective medication which works for you.

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