Bone medication : I have been taking Ibandronic... - LUPUS UK

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Bone medication

DaisyMeadows profile image
10 Replies

I have been taking Ibandronic acid for a few years now for brittle bones due to years of Lupus meds. Recently my new dentist made a point of saying that they look out for it on people’s records as it causes teeth and jaw problems!! My friend just had the same reaction from her dentist.

What’s going on with this? Anybody have any experience with this or know anything please ? Thank you.

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DaisyMeadows profile image
DaisyMeadows
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maggielee profile image
maggielee

Hi Daisy,There is a possible side effect - they say rare that some bone becoming exposed in your jaw and is a rare side effect of treatment with these drugs. ... alendronic acid (Binosto®, Fosamax® or Fosavance®), risedronate sodium (Actonel® or Actonel Combi®), zoledronic ...

A good read is the Scottish website SDCEP -

[PDF] Dental advice for patients prescribed anti-resorptive drugs for the treatment of osteoporosis or other non-malignant diseases of - SDCEPsdcep.org.uk › 2017/04 › SD...

Now what does that mean to us ?

In the long-term is if you are having dental issues, mine a reflection of sjogrens & need to take alendronic acid (I had both tablet & infusion) the dentist prefer to pull questionable teeth before treatment to reduce the possibility of this rare occurrence happening.

You need good dental hygiene.

This was the case (tooth extraction) before I began alendronic acid infusions for three years.

Again another extraction when I had to have chemo. The dentists felt I should have a tooth extraction for an ongoing infection. They were going to pull two 🙄 and lucky for me a oral surgeon I had seen & the brilliant community dentists (my dentist couldn't do it due to covid) emailed each other & basically agreed to let them pull one. The oral surgeon who I saw recently to check healing process wants me to fight for the rest of my teeth.

I should say that the last extraction & having chemo and taking mycophenolate & various other meds my gum area where the tooth was pulled is still healing almost a year on (did freak me out to see my jaw bone).

None of this was the dreaded jaw rot caused by a side effect of having the alendronic acid, but a slow healing process due to high doses of meds for cancer, lupus, sjogrens.....

It is a weighing up process.... ml

DaisyMeadows profile image
DaisyMeadows in reply to maggielee

Thank you so much Maggielee for that. I had never heard of such a thing but am grateful for that information. I shall pass it on to my friend. Seems we are constantly between a rock and a hard place eh 🙄. Thank you xx

Villagelife profile image
Villagelife

My dentist has alendronic acid on my notes as I used to take it, he always checks as to whether I've restarted it. I think surgical procedures can cause problems for those on any bisphosphonate medication, it can cause osteoporosis of the jaw, I think this can delay healing

DaisyMeadows profile image
DaisyMeadows in reply to Villagelife

That doesn’t make sense if you take it for osteoporosis and it can cause it in the jaw. I am sure you are right I am just wondering why they put you on things that cause other problems without warning you. Thank you for the information.

maggielee profile image
maggielee in reply to DaisyMeadows

It's a little different from Villagelife discription. The alendronic acid builds up in your system & it suppose to strengthen your bone density, my family debate this & question about causing brittleness. Bone health is a big subject. Just heard today about my recent dexi scan & my hips are worse, probably due to lack of weight bearing exercise due to a long year of ill health...

The rheumy thought is to put me on another med & not continue with alendronic acid because of my slow healing from a tooth removal & possible side effects of this drug..

Be interesting to find out what that med is?

M

Ingrid1234 profile image
Ingrid1234 in reply to maggielee

Yes, I was prescribed Alendronic acid for bone protection when I was on high dose Prednisolone but read ironically that it can cause jaw necrosis as well which means the jaw bone actually starts withering.

Also you must remain upright for1/2 h when you take it😱so I thought this is NOT on so I stopped taking it.

Jaw necrosis is fully documented in the BNF drug book.

Some docs prescribe Alendronic acid automatically when putting patients on high doses of Pred. Foolish?!

maggielee profile image
maggielee in reply to Ingrid1234

Oh my.... At least for me it was osteo... My mom head it in the early stages of it being used & she & my sisters don't think it helped her... No problems with teeth or jaw bones thank goodness...The sitting up, I thought was it was rough on you stomach? As I already had issues there....sat up... ml

DaisyMeadows profile image
DaisyMeadows

So what should one do then?? I have had 7 breaks in 5 years 😞 2 of them spontaneous. Haven’t had Lupus appointment for two years at least and quite honestly I wouldn’t want to go near a hospital at the moment anyway 😑

maggielee profile image
maggielee

Hi DaisyTry contacting theros.org.uk

The Royal Osteoporosis Society have lots of advice and information.

Having breaks is awful and I took the meds to avoid it despite my families concern. Will post if they offer me a different one as I developed osteoarthritis in my jaw - I just add this aliment to a list of now cumulative overlapping issues...

Sadly osteo is in my family gene pool..vs. autoimmune diseases which none of my many siblings do not have.

I been in & out of hospitals, much quieter now & cleaner (in some I should say). So if I felt the need & could be seen face to face I wouldn't hesitate.

ml

DaisyMeadows profile image
DaisyMeadows in reply to maggielee

Thank you for that, I shall check it out. Going to ring the Lupus team and ask them about it. Thank you.

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