AA or not?

[DDKRM]

I recently had a dexa scan and the results show I now have osteoporosis, after having osteopenia for some years. I have had pmrgca for five years and been taking predisolone reducing down now to 4mg pd. A few years ago I was prescribed alendronic acid, which I found difficult to take and also read that it could be counter indicated, so didn’t continue with it. My gp suggested that I take it now. I asked what alternatives there might be and he mentioned some hospital based ones for injections. I have a telephone appointment with my rheumy in a few days so would discuss it with him. What would it be useful to find out? And does anyone have any experience with having pmr and osteoporosis and how they managed it. I will check out the sidebar references too. But would be interested in what someone has actually gone through coping with it. Thanks in anticipation.

[PMRpro Ambassador]

That's a shame. If you had difficulty taking the AA there are alternatives - some people manage other oral options such as risendronate sodium. There are also infusions given once or twice a year.

A really good place to gather information is the Royal Osteoporosis Society who have an excellent helpline:

theros.org.uk/

[Maisiek]

Sorry to hear this: just to say I take AA( surprising how many people on this forum have problems with alcohol 😜 no problems ; as directed : first thing in the morning , large glass of water , stay sitting up. I haven’t even had a dexa scan and when I asked the rheumy, he said he didn’t want to do anything not essential in the current climate; I take it as a precaution . Good luck!

[MrsNails]

Hi

I took the AA as prescribed (family history) & l showed signs of osteopenia on my Dexa Scan, however l did find it very difficult to take but preserved.....

Anyway, roll forward several years, a diagnosis of breast cancer & one of the adjuvant treatments was in fact Zolendronic Acid, every six months for two years but while l was on it the protocol changed to three years, so my point to telling you this is the IV Zolendronic Acid was completely without issue.....

So there are alternatives & as PMRPRO has mentioned the Royal Osteoporosis Society is you’re will find lots of information.

Best Wishes

MrsN

[Janstr]

I was diagnosed with osteoporisis soon after menopause & had a parent very badly affected by it & in a lot of pain. For 15 years I didn't take the AA drug recommended, but instead took another less effective drug with fewer side effects. I also altered my diet to concentrate on getting a lot of calcium ( I initially took calcium supplements until my GP showed me research that said they can cause heart attacks), took vit D tablets, increased walking ( to between 25 to 40km per week) & started vibration training. The latter was developed for astronauts who lost bone density in space & my doctor suggested that I concentrate on exercises to build up the core muscles, to prevent the spine bending forward. Something, or the mixture of things worked, as my bone density increased over that time.

I had a bone density test a couple of months after my PMR symptoms started, but pre diagnosis & Pred. For some reason there was a large decrease in bone density, so because of my increasing Pmr pain & inability to do much walking, I decided that I didn't want to end up like my mother & to take AA. I had another Dexa scan a week ago & will be interested to see the results, especially as I broke a bone in my foot 8 months ago & have not been able to do a lot of weight bearing exercise, & also have been on Pred now for 2,5 years

I considered myself lucky that I managed to stay off it for so long.

[Rugger]

I have osteoporosis and take Risedronate sodium instead of AA. I still have to take it with a full glass of water and sit upright for 30 minutes but have had no GI problems with it. Two years after the initial DEXA scan and many mg of pred later, my bone 'score' remained the same.

Best wishes, whatever you decide.

[Hidden]

I am at the start of the osteoporosis journey like you. Had seven vertebral compression fractures before discovered and now taking Prolia. Second shot next month. Will just see how it plays out. Do keep posting. My best.

[Skodadet]

I can't take A A either and won't take the Denusomab recommended on the advice of my dentist. I take K2, boron, calcium citrate, vitamin d and magnesium. I try to be as active as possible. I'm lucky enough to have improved my score in four years and have gone from the osteoporosis range to osteopaenia.

[Thelmarina]

A friend of mine was on Alendronic acid for several years with no problem. I’m on Ibandronic acid which I take once a month, much more convenient, so far so good. 🌺