Alendronic Acid

[GpaJ]

I was diagnosed with PMR in 2013 and began taking Prednisolone (15mg daily) and Alendronic Acid. After many 'flare-ups', and reducing very, very slowly I have now been on a 2mg daily dose of Pred for several months. I had a Dexa scan in 2017 which was fine, but during my annual consultation with a Pharmacist a couple of days ago she thought I should have another Dexa scan. I had a pre-arranged appt. with a GP at my local surgery today and so took the opportunity of talking to her about this. She checked my records and said a further scan was not needed and also that as I was now on 2mg Prednisolone daily, I no longer needed to take Alendronic Acid and she deleted it from my repeat prescription then and there. I would be interested to know if other members have been told this and also with the problems I've had with reducing down to 2mg should I try to reduce even lower.

[DorsetLady PMRGCAuk volunteer]

After I’d been on Pred for about 4 years, I questioned if I still needed to be on it, GP agreed I didn’t, so I stopped it.

In fact you should stop it after 5 years - says in the patient information leaflet....that should have been picked up before if you’ve been taking it since 2013.

What specific problems are you having? ...and how long?

[GpaJ in reply to DorsetLady]

Thanks for your prompt reply. I don't have any problems with PMR really apart from the fatigue. I also have a long history of cardiac problems so that too doesn't help with my fatigue. More recently I was diagnosed with spinal stenosis so that is slowing me down as well but my rollator is a great asset when we are getting our daily exercise walking by the River Stour in the north of the county!

[DorsetLady PMRGCAuk volunteer in reply to GpaJ]

Would say the fatigue maybe due to adrenals still stuttering along - but as you say cardiac issues don’t help either.

As far north as somewhere beginning with Gil....or Stur....or BF?

[GpaJ in reply to DorsetLady]

Gill!!

[DorsetLady PMRGCAuk volunteer in reply to GpaJ]

Ok...that’s altered a lot over the years hasn’t it?

[Suffererc]

Only took AA for a few months at the start. Asked for deca scan and found not really needed. I am on 6mg pred now. Have on my repeat prescription but don’t take it

[PMRpro Ambassador]

Prof Dasgupta said in a webinar a few months ago that he often keeps patients at 2-3mg indefinitely as it seems to reduce the incidence of relapses. I'd be very happy to rest on my laurels at that sort of dose if I were doing well on it - I see no point in risking flares and the trouble that sometimes arises trying to get it under control again, especially if you have been struggling.

I never took AA after the first 4 tablets - and my bone density has remained almost unchanged after over 11 years on pred, a lot of it at over 10mg.

[GpaJ in reply to PMRpro]

Thank you so much for your information and advice. I will be taking my unwanted AA tablets back to the Pharmacy this afternoon!

[PMRpro Ambassador in reply to GpaJ]

Will the GP take you staying at 2mg lying down?

[GpaJ in reply to PMRpro]

I am SO sorry PMRpro but I'm not too sure of the meaning of your question! Am I the one who's lying down or is the GP lying down? Many apologies G'paJ :-)!

[PMRpro Ambassador in reply to GpaJ]

Will they accept you staying at 2mg indefinitely if that is what YOU want to do? Or will they make a fuss?

[GpaJ in reply to PMRpro]

Thank you , it was a GP in my local practice, who had all my records dating back to my cardiac arrest in 1983 in front of her, who made the decision and she was quite happy that I remain on 2mg. I haven't seen a Consultant for 2/3 years, they seemed quite satisfied with my progress when I last saw one. I think I will remain at 2mg rather than risking 'flares', as you suggest.

[PMRpro Ambassador in reply to GpaJ]

Excellent!!!

[Enemyofthestate]

Dear Gpa. I'm off alendronic and ok on 6mg pred but can I ask whats a Dexa scan? Ade

[PMRpro Ambassador in reply to Enemyofthestate]

A dexascan is a special form of low energy x-ray that measures the density of the bone and identifies bone that is low density.

[piglette in reply to Enemyofthestate]

A Dexascan will tell you if you have osteoporosis or osteopenia or if your bone density is pretty normal when you would not need Alendronic Acid or equivalent.

[Enemyofthestate in reply to piglette]

👍

[AmberAliona]

I was diagnosed in 2017, and my GP gave me Alendronic Acid. However, when I saw my Gastroenterologist, he was horrified as I have severe reflux, stomach ulcer and hiatus hernia. I wondered why the reflux was so severe. I was only on it for 2 weeks. I am on 8mgs predisolone, but would never take Alundronic Acid ever again.

[Enemyofthestate in reply to AmberAliona]

Sorry to hear that. Dodgey stuff this alendronic so won't be going back to it.

[Lowercwmtwrch in reply to Enemyofthestate]

I won't touch it either! Pains in my jaw & ear with vertigo after only taking it twice, im told they use it as a water softener!

[PMRpro Ambassador in reply to Lowercwmtwrch]

Not in the form it is used as a medication!!

[Lowercwmtwrch in reply to PMRpro]

Oh, im so glad!

[Ormesby13]

Hi, I am on 1mg of pred and have not been told not to take alendronic so maybe had better contact Dr about this.