Hi, I have been on Pred and also Alendronic Acid since diagnosis for PMR March 22
I decided against Omeprezole in favour of taking live yogart like others on this site and Rheumi agreed. And have just reduced to 3mg of pred.
I saw my rheumi on Monday who was pleased with how I was doing and who is generally helpful and fairly flexible. I asked if I could come off the AA when I stop taking the pred. He said no and I would probably need to continue the AA between 2 and 5 years due to Osteopina in my hip.
Having read other peoples posts I feel quite unsettled. I have read various suggested articles concerning exercise and vits etc.( I know no one can decide for me.)
A retired nurse friend suggested once you are on AA you are on it for life. I understand how essential prednisilone is , however it seems that exercise and diet can improve bone strength. Rheumi has agreed to repeat dexa in November and I have a follow up appt then.
My last dexa around June 22 was Lumbar Spine T score -0.1 which I believe is fine,
and Hip T score (L) -1.9 and Femoral Neck T score -2.1
I am perhaps very optimistically hoping to be off pred by June and if this is the case I am considering telling Rheumi I want to come off AA and try altenative diet and exercise methods.I understand that bone changes are quite slow so iIcould review my options.
Any thoughts would be welcome. Thanks
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Animalover65
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"A retired nurse friend suggested once you are on AA you are on it for life"
Well you shouldn't be - it is recommended a drug holiday is taken after 3 to 5 years as over long periods the bone being formed becomes abnormal and actually more fragile which is hardly the idea!
HeronNS wrote her story - pre-pred her hip t-score was -2-1 and she was told it was osteoporitic - no it isn't, that starts at -2,5, She took supplements and exercised with a weighted vest and in a relatively short time the score improved to -1.6, no medication required.
Slightly concerned that your friend being a nurse has said that as you certainly do not take it for life. You have to have a break. Do you take VitD?Over medication of Alendronic Acid can ironically have the opposite effect and make your bones more brittle. I know, you couldn't make it up!
I was prescribed AA when I was first diagnosed with PMR back in 2019, but not before I'd insisted on a DEXA scan to provide evidence that I actually needed a biphosphonate. Unfortunately, the scan showed that at that time it would indeed be sensible to take the medication and so I agreed. I also was given Calci-D (a calcium/Vit.D combined supplement)
However, almost 3yrs later, I had another DEXA scan which showed a very significant improvement in my bone health that the specialist almost didn't believe.
Obviously, some of that improvement was down to the AA, but to support that I'd also put some strategies of my own into place:-
- A calcium rich diet
- Took a Vit.K2 supplement (because this improves the absorption of the calcium, directing more of it to the bones rather than depositing it in the blood vessels)
- Took up 'Yoga for Osteoporosis' because it offers specific bone- strengthening exercises. (lots on YouTube)
- Did resistance work and light weights at the gym, for further bone strengthening
- Got out and simply walked more.
I am now currently not on AA anymore, nor am I taking a calcium supplement.
My recent blood work (12mths later) shows blood calcium levels are being maintained well within normal parameters through diet alone.
I do continue to take a high dose of Vit.D3 daily alongside the Vit.K2 and will have a further DEXA scan at a later date to monitor any changes.
So.....I am living proof that we definitely don't need to take AA for the rest of our lives, and that sometimes, we can improve our bone health ourselves..... and in what could be considered to be a relatively short space of time too.
As Pro already mentioned....AA acid requires a break after 3 to 5 yrs.
My rheumatologist explained it in very simple terms to me by saying that normally we have specialist cells that build new bone and remove old bone. The AA helps build new bone but on top of the old bone.... it doesn't remove the old bone. Over time, this will also cause the bones to become brittle and weak.
The process is obviously a lot more involved than that and others may be able to explain it better or more accurately than me but there's a very good reason why a 'drug holiday' is necessary.
Only you can decide what to do, but hopefully all the responses here will lead you to making a decision that's right for you.
I hope describing my experience has helped, but definitely take Pro's advice and read HeronNS's story.
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