New Medication is not new.

Pat like you I refused to continue taking AA after about 2 months ito starting preds as I felt so bad on the day I took it.  Have improved but had a word with my GP insisting it was not worth the hassle as I had not had a Dexascan as a ref.  You can only take AA for up to 5 years!

Pat, she's so wrong.  I took steroids for five and a half years, starting at 40mg.  Not only did I not take anything along the lines of Alendronic Acid, I wasn't even prescribed calcium or Vit D.   My privately arranged DEXA at the outset showed normal bone density, and a couple of years later a repeat DEXA showed a tiny deterioration just into the osteopenia range (the stage before osteoporosis), but not needing any treatment. Now 3 years since reaching remission from PMR and GCA, and zero Pred, my latest DEXA has actually shown a small improvement.

My advice would be to walk every day without fail, even if you can only manage 10 minutes.  Even at my worst, I didn't fail to have my daily walk, sometimes having to stop and sit on a wall for a few minutes to recover for the return journey home.  It is one of the best weight-bearing exercises you can do to help your bones.

Also, including plenty of oily fish in your diet for its Omega 3 will help you bones.

The red dot in your eye: subcongunctival haemorrrhage (burst blood vessel) - probably due to the steroids thinning the blood but absolutely nothing to worry about.

Still insist on having that DEXA scan some time though.

Hi Pat, what a wasted appointment. 

I was prescribed AA by a locum at my old GP surgery when he read that I had PMR. I dutifully took it every Sunday prior to church. I never experienced any side effects and was very happy taking it until I came across a discussion on it on this site. I immediately got on line and looked up the drug and its side effects. I have never been offered a scan and I am now 54 (52 when diagnosed). I am very precious about my teeth and it was the information about the jaw bone disintegrating that scared me witless. 

Patients that have or are receiving medication for cancer are at the most  risk if they take AA and the problems can be especially bad if you are taking the AA yearly by intravenous. As oregonjohn says these drugs can only be used for a maximum of 5 years because at that stage they actually have the opposite effect for what they were intended for and begin to crumble the bones.

following the decision on the subject I asked my rheumatologist if I could stop taking them and he was only too happy to oblige saying that he only prescribes AA to his patients that are over 75.

AA takes about a year to actually have any effect, but once the drug is taken  what you have taken will stay in your body for an estimated 10 years, please someone out there please correct me if that's wrong. My rheumatologist has advised me to always tell my dentist that I took the drug and for how long because of the possible side effect of the jaw bone disintegration which could pose a problem if you are having a tooth extraction.

but I say, if it is proved via a scan etc that I require the drug then I would take it, but yo have been prescribed it willy nilly has really annoyed me.

good luck Pat, regards, christina 

Hi pat,

i take AA ,I was diagnosed with osteoporosis in right femur and osteopenia in left femur ,before I was diagnosed with PMR,so I take it as do not want to,fall and break hip etc. not happy taking it but as pred can cause osteoporosis decided I should. Definitely not new drug a friend has taken it for 5 years,she now has injections as was told 5 years is max time one should take it.

she has very bad oesteoporosis ,can break a bone very easily.

hope this helps 

Jenny

Hi

I had GCA for 5 years, now in 4th year of remission.

Six months into GCA - Rheumy ordered Dexa Scan - result Bone Density normal.

Two years down the line - another Dexa Scan - bone density, no change.

Five years - after finishing pred - Dexa Scan - bone density no change.

It does not have to be AA, there are other meds available.  Visit the National Osteoporosis site and look them up.

You can also look up the side effects of AA.

Then make your own mind up which route you want to take.

PS:  A Dexa Scan takes about 20 minutes and the approx cost to the NHS is between £20 to £25.

 

" She was nice enough and told me that the steroids would definitely lead to osteoperosis even if a dexa scan was taken and bone density was normal, because of the long term use as well as the high dose."

Well really? Lodger, MrsO and I are all longterm users of pred at over 10mg/day, they had far higher for much longer than me. None of us has osteoporosis and none of us has taken AA. My dexascan had not changed enough after nearly 4 years of pred to make any of my doctors say I needed more than calcium and vit D. I'll consider taking it if they show me I need it - then and only then.

AA won't do owt to your muscles - it may increase the bone density but whether that will stop you having a broken bone is another question. It shouldn't be taken for more than 5 years at a go - so you get a dexascan reading as a baseline and then decide what to do. if you aren't osteoporitic you take calcium and vit D and repeat the scan after 2 or 3 years. Rinse and repeat.

Christina - "it's there after 10 years" - the figure of 10 years is because that is how long they have monitored it for. A similar drug has been used for some 50 years for patients with other bone diseases but AA has only been licensed for use in the general population for about 15 years (1999) and hasn't been used even as long as that for very large populations. The risks associated with its use have been emerging in the last 7 or 8 years - and the FDA have been adding warnings about its use at intervals. The likelihood is that as time goes on the time it remains in your body will simply increase as they have the evidence.

One lady on another forum told us she was asked by her orthopaedic specialist why she was taking AA - she told him it is handed out like sweeties if you are on pred. He just rolled his eyes.

I will take it if a dexascan shows I need it - then and only then. If I don't need it I won't take it "just in case" and because a drug company did a very clever marketing campaign and convinced a lot of doctors it was a wonder-drug that would prevent broken hips and had no side effects. It does have side effects, some are quite nasty and dentists are very wary of working on patients who have been on it.

Pat, If it were me I would stick to my guns and say you do not wish to take any drug unless it has been found that your body needs it. SO - DEXA SCANF FIRST to see what your bones are like. This sounds obvious but GPs now tend to use bone meds. as a preventative measure - the GP "rule of thumbt" is  -   if a patient is on a Pred. dose of 5mg. or greater for more than 3 months, they are AT RISK  of developing OP (most bone damage done in the first 3 months) or if they already have OP and do not know it (as 50% of women do), their bones will deteriorate further in this time. So we're back to the scan again, if it's normal I wouldn't take a med. as a preventative treatment but I would take a Calcium and Vit. D supplement if I was not getting 1200mg Calcium daily in my diet. And repeat the scan in 2 years - to be sure. If you have diagnosed OP I would take a medication for it and there's lots available with different frequency of administration - daily, weekly, monthly, 6-monthly or yearly. Something will suit. Don't go down the route of worrying about side-effects 'til you find if you even need to take it . . . Keep in touch.