Alendronic Acid-Decision Made

[Gc2596]

Following a 'face to face' consultation yesterday with my GP I have taken his "strong" advice, went home and took the Alendronic Acid (empty stomach). Although young himself he contracted an autoimmune condition during Covid resulting in him being on Pred/AA. Also due to ulcers underwent tooth extraction (one of my concerns following jaw osteonecrosis of someone I know). He was keen to tell me his "personal story". It was the lumbar spine T-2.1, rather than hip/femoral neck result that was the concern. Yes, as advised on forum some damage may well have been done and as he said with Dexa not being done when prescribed Pred don't know what was prior. Taking into account length of time may well be on this journey, and that's if I'm able to now taper more successfully, I weighed everything up and although perhaps trying to convince myself could mitigate possible damage without AA on balance hopefully correct decision. Thank goodness my deliberations ended. Just need to accept taking it and see if can tolerate without problems now. GP noted my records to have another Dexa scan in 3 years, as opposed to 5. Also prescribed Calci-D. I note the VitD 1000mg, which is what I currently take. Wondering if to stop my current amount, although the Osteopath recommended 4000mg. Bloods in 2 weeks where VitD/calcium being checked so perhaps prudent to await results? Also checking blood sugar, fine at 37 when diagnosed but interesting to see what effect Pred has had. Have to say that although I've cut down on amounts of carbs I'm not following low carb diet. I have maintained my weight (5'3"-8st8lbs), actually only increased by 3lbs since losing 6lbs due to PMR, so don't want to lose more. Afraid lunch is usually a wholemeal bread sarni and I like pasta and potatoes 🙄.Regarding tapering going forward GP considers me "sensible and well informed" (debatable sometimes!) The 'informed' due mostly to what I've learnt here, and in the main leaving me to manage. Suggesting 1mg every month and see how goes. I did mention DLs Slow Taper and he was quite relaxed about that approach. After reducing from 10mg to 9mg 13 days ago will stay at that at least another good couple of weeks or so. Feel going much better than last attempt early January when had to go back to 10mg following pretty quick return of my usual symptoms across neck/shoulders/back of thigh.

Assuming bloods ok GP will see me again in 3 months. He is very understanding and wants consistency with himself (only seen one other-locum) so that in itself reassuring.

Thank you for reading my long winded update.

[DorsetLady PMRGCAuk volunteer]

Good to hear such a positive appointment- and he seems to be a good ‘un.. so hope you can hang on to him.. 😊

[Gc2596 in reply to DorsetLady]

Yes, me too! Considering the comments sometimes on GPs/Rheumatologists I appear to have fallen lucky with mine and hopefully will be with me throughout. I was his first of the morning patients, he started 10mins early and I was in for 25mins. So although effectively exceeded a 10mins appointment by 5mins there is never a feeling of 'let's get you sorted and out the door'.

[PMRpro Ambassador]

He sounds like a keeper!! Experience is valuable and few have it.

[Gc2596 in reply to PMRpro]

Certainly hoping so and as in my reply to DL I seem to have fallen lucky with him. Plus, after too quick a taper from 10mg to 5mg (then back up) he's certainly taken that knowledge of my reaction on board.

[Excelsior80]

Thank you so much for updating ... not long winded, fascinating. I hope it goes well .... my cousin is taking AA and has had no problems with it at all. I am not, for now, also doctors advice, but still slightly wondering if its the best decision ..... and may rethink, especially if I have to increase pred at some point.

[Gc2596 in reply to Excelsior80]

Glad you appreciated as thought many might have nodded off! Although we started on Pred within a month of each other your progress has been much more stable. As you indicated your GPs decision not to force the AA issue was partly based on your lower current dose. In a way I'm relieved as had I decided not to take would have been far more worried about a slower taper/possible flare. I might then well have become an Ostrich and tried to ignore any possible returning symptoms. Hope you continue to do well.

[diana1998 in reply to Excelsior80]

My advice would be to take it. I was prescribed it 9 years ago but chose not to. I regret this now as last year I ended up with a badly broken humerus (after being knocked over by a dog), which might not have happened had I followed instructions. I now take Risedronate recommended by the fracture clinic with no side effects. I have osteopenia, not osteoporosis.

[Gc2596 in reply to diana1998]

My Dexa scan classified as Osteopenia. Even being on a bisphosphonate it's not to say you won't sustain a fracture but hopefully less likely. My neighbour's husband fell on a hard surface and broke his hip. He had been taking AA for some time. If only we had a crystal ball, but considering what 'might' happen perhaps not!

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

Taking AA won’t stop you breaking a bone if you have an accident.. that’s just life and bad luck. But it will help bones from crumbling away from osteoporosis..

[diana1998 in reply to Gc2596]

I was thrown backwards so hard I feel anyone of my age would has sustained some sort of fracture. I heard my head go clunk very hard so lucky no bleed on the brain!

[AgedCrone in reply to Excelsior80]

Do speak to the nurses at the Royal Osteoporosis Society.

They know much more than the regularGP over the years, & they give sensible advice directed at one’s personal circumstances.

[Phoebenooby]

Very informative read, I was offered AA but refused after reading about it, never sure what to do for the best, as no one ever seems to know..good luck

[Gc2596 in reply to Phoebenooby]

Yes, understand fully and I too was very undecided but now 'grasped the nettle' and perhaps time will tell. May be before next Dexa scan in 3 years I'm on a very low dose of Pred or even totally in remission. Can but hope. Then depending on situation and Dexa results could come off AA, although stays in your system for a long time I believe. A bit of 'damned if you do, damned if you don't! If nothing else my mind is much clearer having made a decision and that's worth a lot.