Further medication allendronic acid.

[Valentina1]

Hi All

Latest yesterday in fact Allendronic acid added to the list. I have just read the advise paper which comes with and I felt no no no. I need others coments please. I need an arm around me. I was horrified at the thought of inflicting more poison on my poor old body. The list of side affects shocked me. I want to hear others experiences please. I am now down to 15mgs of pred back on anti coagulation . I do find if I am less than 20mgs I am able to cope better,

I want to thank the lady who recommended Double Base Gell to me. great stuff.

I am now 5 different doctors in and awaiting a consultant appointment. Scan on my leg Monday. Did I have another DVT I personally don't think so We will see.

It didn't rain today.

Hope everyone is well.

[PMRpro Ambassador]

Why is AA being added? Have you had a dexascan result in?

[Valentina1 in reply to PMRpro]

Not as far as I know. No Consultant yet its a long time.

[PMRpro Ambassador in reply to Valentina1]

So what is the reasoning in adding it now?

[Valentina1 in reply to PMRpro]

I don't really know other than I have been on preds for a fair while now early Jan. and he feels its would be wise. By the way he on asking agreed I was possibly one of the10% who don't receive steroid treatment well. I don't want you to thin k I am a wimp I have had many issues to get over including 3 DVTs But this is knocking me too much maybe because I am old now. Its such a struggle. Sorry.

[PMRpro Ambassador in reply to Valentina1]

I never took it and after 7 years my bone density hadn't changed significantly from the osteopenia it was to start with - I had taken calcium and vit D religiously though.

[Valentina1 in reply to PMRpro]

I have no proof I need it. Until this polymyalgia hit me I was a fairly fit women and looked 10 years younger having always walked and a gardener as well as DIY Never broken a bone either. So I don't know if I need it. You say there is a test Dexascan .

[PMRpro Ambassador in reply to Valentina1]

Yes - my new mantra is "No dexascan, no alendronic acid ..."

[Valentina1 in reply to PMRpro]

thank you.

[granny-b in reply to PMRpro]

Hi. Did you take the aa and the calcium+vit d at the same time? My GP thinks this is the meds to have....??

[PMRpro Ambassador in reply to granny-b]

I did not take AA for more than 4 weeks. I have always taken calcium and vit D since being on pred - it has been all I needed.

AA should always be given together with calcium and vit D and their blood levels checked before starting AA: unless you are adequately supplied with both and the blood levels are correct then AA cannot work at all and it may even be a waste of time giving it.

[Valentina1 in reply to granny-b]

Good morning I am not going to take this further medication without a scan. So I havnt begun. Yes I do have the Vit.D and Calcium.

I was able to look up my blood levels against bones it said satisfactory. I guess this is totally precautionary a measure. Thank you.

[DorsetLady PMRGCAuk volunteer]

I took it for about 4 years because I needed it with no problem whatsoever - but if you don’t need it, don’t take it!

[Valentina1 in reply to DorsetLady]

Thank you.

[Stkeyna]

Hi, I have been on prednisolone for 10 years now at various levels. I was told to go on AA after about three months due, as I understood it, to the steroids thinning the bones and thus I needed a protection i.e. AA. I have been told if you are on 7 mgs of pred. and below you may not need it! However you have to be careful and make sure you drink plenty of water when taking it as well as not lying down or going back to bed. I ended up getting esophagitis from not taking enough water and have now been moved over to risedronate. Also for those long term sufferers - which thankfully you are not - that you are suppose to come off AA after five years. You are meant to have a 6 month break from it although no one told me this and discovered this fact after 7 years!

Interested to see other people's views about not taking AA and managing on calcium and vitamin d. However you have to take care with calcium tablets as they can lead to kidney stones which again happened to me.

Anyway good luck with it all!

Ian

[Valentina1 in reply to Stkeyna]

Thank you Stkeyna. Have spent sometime now reading up and have decided to ring Doctor and tell him I am not prepared to take this without a bone density scan ie Dexsacan . I really appreciate your shareing with me.

I have also spoken to me German daughter in law She is a working pharmacist and she tells me in Germany bone density scans are really cheap and freely offered and always before prescribing Alendronic acid.

Take care of yourself