just been prescribed AA & Adcal D3?

[Cfmad298601]

a big shout out to all you wonderful people.

Diag early Oct 2022 with GCA, started on 40mg, now on 15mg. Had my Rheumy follow up appt a couple of weeks ago where she seems to have passed me back to my GP to continue the pred.

I had a tele appt a week ago with GP and she has prescribed some more pred but also AA & Adcal D3, neither of these were given to me before (whilst on higher pred????) which seems strange?

Neither did she really explain either of these, other than my understanding of the possibility of osteoporosis. I have been taking my own vits etc, including omega oil and calcium & vitD since being on pred.

what worries me is what I’ve read about AA on this site, sounds horrendous, and to top that absolutely no one , Rheumy or GP, has even so much as mentioned a DEXA scan ??

Should I be asking for one, before taking any of this AA……

[DorsetLady PMRGCAuk volunteer]

Short answer -yes.

You may not need AA -so why takes extra meds if not required.

I took it for 4 years because I needed to -and in high GCA Pred doses -and I didn’t have any problem with taking it.

Last DEXA scan after remission, so no steroids was good, but recommended I continue Adcal -which I have.

[SnazzyD]

I said I wouldn’t take AA unless a DEXA scan said I needed to. Turned out I didn’t need it even though it showed I was osteopaenic. That was useful because I know it wasn’t the Pred that did it (likely low VitD and ovary removal) and also a retest 3.5 years later having been on Pred for GCA I had lost about 3-3.5%.

[piglette]

Personally I would not take AA without a Dexascan to prove I needed it. The trouble is there is a tick list for doctors somewhere that says prescribe AA and Methotrexate, so they blindly follow the rules. I have been fighting with my GP forever about AA. My Dexascan shows I have cast iron bones and still he goes on about it every time I am in contact.

[PMRpro Ambassador]

Personally I wouldn't take AA without a dexascan result that showed I needed it. You should take the AdCal - and probably more vit D than it has in it. I had a dexascan that showed I didn't need AA and 12 years later I still didn't need it despite pred at above 10mg for all that time. Loss of bone density isn't inevitable on pred. I did take AdCal plus extra vit D for years but gave up the calcium side some time ago because it caused urinary tract problems. I take 4000 IU of vit D, any less than that and the blood level just slowly subsides back into the depleted range.

If you take AA because it is shown to be advisable, there are contraindications if you have gastric problems or difficulty swallowing and there are alternatives which are given by infusion once a year to avoid the gastric issues. But it isn't always a problem as DL says - you just hear about the horror stories!

[Rowergirl]

I was diagnosed with osteoporosis of the spine after my first DEXA which shocked me as I consider my diet 'bone healthy' and I lift weights /do resistance work at least twice weekly. I was started on AA and Ca and Vit D and have absolutely no problems. Yes it is a pain having to take it at leat half an hour before that first cup of coffee or breakfast, but I just get up, taken my AA have a shower etc then I can carry on as normal.

[67Blue in reply to Rowergirl]

I took AA for about a year and a half from the diagnosis of GCA/PMR and am not aware of any problems created by it. I finally got a dexa scan ( as requested by me ) and they said my bone condition were similar to someone my age (75) so I could leave off when I got to 5. mgs of pred. Which I have done. So far I have never been given the actual results of the scan as when asked they said they didn't have time to send them to me, or the surgery it seems. Times are hard here.

[DorsetLady PMRGCAuk volunteer in reply to 67Blue]

. So far I have never been given the actual results of the scan as when asked they said they didn't have time to send them to me, or the surgery it seems.

That's not acceptable, they are your results, you have a right to view them - look at your hospital webpage - and contact PALS... there should be a link.

..if you have NHS App, they may be on there - but I know no everyone has access.

[Rowergirl in reply to 67Blue]

I asked for a copy of my DEXA scan results and got it from the GP practice no problem. ( we don’t have an NHS app in Scotland)

[bakis]

I've taken AA because of the prednisolone for 3 years, no idea whether I really need it, but have had no problems with it. You need to tell the dentist you're on it.