Nervous about taking Alendronic acid

[Judy211]

Hi, I'm new! I am wondering whether everyone is taking Alendronic acid with their Pred? I was diagnosed with GCA six weeks ago...no eye problems so started on 40mg Pred and reduced last week to 30mg, but I have yet to take my first dose of Alendronic acid. I don't know why but I feel really nervous about taking it. My DEXA last summer was fine but my mum had osteoporosis and fractured her hip in later life so added to steroids my rheumy says I should start the weekly Alendronic acid treatment. At the moment, I have no symptoms of PMR and so I am keeping fit and really taking care with diet etc, vitamins. Should I just get on and take it?I would be really grateful for any advice.

[SnazzyD]

Hi,

My GCA came on six weeks ago too. This is a much debated point and there are people on the forum more informed than I and a variety of approaches and outcomes. It would be worth looking at past posts.

For what it's worth, my DEXA last week said my Femur T score was -1.45SD making me osteopaenic rather than osteoporotic. Putting it through the FRAX tool that works out your fracture risks, put me inside the requiring treatment zone. With no family history at all, I put my score down to early surgical menopause at 42, Vit D deficiency from lack of sun, no dairy (though use of that is also debated) and being unable to eat oily fish since a few years ago. Even with that score they are still prepared to treat with VitD and calcium and do the DEXA again in 2 years. You have osteoporosis in the family and it would be interesting to know what factors caused it and whether it might also apply to you.

[Judy211 in reply to SnazzyD]

This is such a supportive site, thank you so much to everyone responding.

This whole business has a steep learning curve but I have now started reading older posts and Kate Gilbert's book has just arrived from Amazon...I will soon get the hang of all this! Seems we really do need to take responsibility for ourselves, do the research, listen to advice from fellow sufferers and then try to make 'informed' decisions.

I am seeing my rheumy in two weeks and I will grill him! I will definitely hold off on the AA til then. Not always easy to stand up to these professionals, but yes, you are right, it is my decision to make and I would really rather try natural methods unless there is a really good reason to do otherwise. I shall report back!

[DorsetLady PMRGCAuk volunteer]

If you need AA because your DEXA shows it's required then yes. If DEXA is okay then VitD and Calcium will probably be enough to protect your bones.

I took it for 4 years - early hysterectomy (37), very high doses Pred and like you my Mum had osteoporosis. It didn't cause me a problem (that I know of), but after 4 years decided I probably taken enough, was also down to low doses of Pred by then. GP agreed.

AA is not related to PMR, but to the Pred which is what can affect your bones.

At the end of the day it's your decision, but no point taking another medication if you don't need it. Just check first.

[Judy211 in reply to DorsetLady]

Thank you, DorsetLady. I am chasing up a copy of my DEXA right now to get the relevant figures and then I should be able to make a decision.

[PMRpro Ambassador]

I took 4 tablets of the AA handed out as standard with my pred. Then I discussed it with a different doctor and we decided we'd wait for the DEXA result. It was fine. I have had 2 further DEXAs done in the nearly 8 years I have been on pred, religiously taking calcium and vit D tablets. My bone density has barely changed.

It isn't recommended to be taken for more than 5 years - and more recent recommendations are for much shorter use for safety. It seems to contribute to the formation of denser bone but the structure is different and after a few years microcracks have been found to form which make the bone more fragile.

Heron on this forum is the expert about natural methods of improving bone density - she'll explain her approach when she gets up in Canada!

[Judy211 in reply to PMRpro]

Its reassuring to hear that your bone density has barely changed in eight years... that's brilliant. Heron sounds right up my street...I have just read a few of her older posts and my approach through a totally 'clean' diet with vitamins and exercise sounds similar. Whether it will work for me, I don't know yet, but just the feeling that I may have some measure of control feels good!

[HeronNS in reply to Judy211]

No need to repeat it all here then! All the best....

[Hindags]

I chose to go with AA because tho my bone density is more or less normal for my age and was stable for two years without treatment, I do have osteoporosis.

My frac score is just too high once you factor in the Pred.

I cried myself to sleep the night befor my first pill. So far I have no side effects that I'm aware of, but I know that can sneak up on one.

Good luck with your decision and may the PMR/GCA seas be as smooth sailing as possible.

[Marcy47]

I stopped taking AA as I was nervous about it. I asked for a Dexascan and the results showed I needed it so I am back on it. Last week after more blood tests which showed my Calcium and Vit D levels are good, my Dr has taken me off the Calcium and Vit D tablets!

[PMRpro Ambassador in reply to Marcy47]

Not sure that is a good idea - I hope he is going to keep checking them as AA won't work without plenty of calcium and vit D.

[karools16]

Alendronic Acid isn't the only thing you can take. I have Osteoporosis. My Dr. prescribed AA, which made me so sick, I refused to take them. I now take Ibandronic Acid Mylan, once a MONTH, and no problems at all.

[Marlenec]

Hi Judy

Make sure you visit your dentist before you take AA as can cause problems if you need invasive dental work, extractions etc. I took AA from October 2016 but stopped two months ago when I nagged my GP for a DEXA scan. I got the results this week which are good and AA not needed. I take Calcichew D3, bought a fitness monitor to count my steps, and walk more, so hope to strengthen bones this way.

Good luck which ever way you choose.

[Tonylynn]

One of the foremost experts on GCA is Professor Dasgupta. He wrote to me recently as follows "We recommend that all patients with GCA be started on Bisphosphonates because of the high dose of treatment as well as the prolonged duration of treatment so there is no doubt that Bisphosphonates should be given along with the treatment of GCA".