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.
Alendronic Acid: I was diagnosed with PMR in 201... - PMRGCAuk
Alendronic Acid
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?
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!
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?
Gill!!
Ok...that’s altered a lot over the years hasn’t it?
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
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.
Thank you so much for your information and advice. I will be taking my unwanted AA tablets back to the Pharmacy this afternoon!
Will the GP take you staying at 2mg lying down?
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 :-)!
Will they accept you staying at 2mg indefinitely if that is what YOU want to do? Or will they make a fuss?
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.
Dear Gpa. I'm off alendronic and ok on 6mg pred but can I ask whats a Dexa scan? Ade
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.
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.
👍
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.
Sorry to hear that. Dodgey stuff this alendronic so won't be going back to it.
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!
Not in the form it is used as a medication!!
Oh, im so glad!
Hi, I am on 1mg of pred and have not been told not to take alendronic so maybe had better contact Dr about this.
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