Alendronic acid

[Bobbury]

Since my flair up I've now been on 15mg pred ( up from 7mg)for 3 weeks.

Well, iv'e not felt this good in years. I can actually walk properly, walk with a stride and at a decent pace without feeling that my legs are bound by a resistance band. My energy levels are almost normal as some 4 years ago. I still do take it easy and I know when to rest. But all in all I just feel a better person. I don't feel so down, depressed. Life in general is very good right now. The GP is saying I need to have a to reduce, i need a programme and he has suggested one that is similar to the ones that Dorset Lady and PMRpro suggested some weeks ago. I totally understand and agree to that. For me that's not a problem. However, he is also saying I need to Alendronic acid together with the calcium and vit D i'm currently taking. Albeit don't take the Alendronic acid and Calcium on the same day. I'm really not sure about this, I don't feel comfortable in taking the Alendronic Acid especially after reading the side effects. I don't want anymore problems than the ones I've got already, Gout and peripheral neuropathy in my feet. Advice please. Many thanks for reading this.

[SheffieldJane]

Insist on a DEXA bone scan first and agree to this pretty serious drug only if you have developed osteoporosis - is my advice.

[SnazzyD]

I refused until I had had a DEXA scan. 3 months later it was found that although I had a bit of osteopaenia I didn’t need AA. Also, getting a baseline scan will tell you if any bone loss has already happened before Pred or if Pred has caused a problem later down the line. My main bone loss turned out to be removal of ovaries 12 years previously and a very low vitamin D probably through that time too. From starting on 60mg Pred and taking 3.5 years to get to zero I lost another 3-3.5%. I’m still just below the treatment line but another course of Pred might be significant.

[Bobbury in reply to SnazzyD]

Thanks. I’ll try and get one!

[DorsetLady PMRGCAuk volunteer]

DEXA scan first to see if it’s necessary -

This from guidelines -

6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis

1. Individuals with high fracture risk, e.g. aged ⩾65 years or prior fragility fracture Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

2. Other individuals Calcium and vitamin D supplementation when starting steroid therapy

.DEXA scan recommended

A bone-sparing agent may be indicated if T-score is −1.5 or lower.

3. Individuals requiring higher initial steroid dose 

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)

[Bobbury in reply to DorsetLady]

Thanks I’ll speak to the GP to get a scan. I think I must be due one. Can’t remember the last time I had one.

[DorsetLady PMRGCAuk volunteer in reply to Bobbury]

can you remember what last one said?…

[Bobbury in reply to DorsetLady]

It was good, no problems. They said have another one after 3 years. Forgot all about it until it was mentioned today!

[PMRpro Ambassador]

" Albeit don't take the Alendronic acid and Calcium on the same day"

Er - think he is a bit confused! It is pred and calcium that shouldn't be taken at the same time but it is only a couple of hours difference!!

My mantra - no dexascan, no AA. Show me I need it first. Then we will discuss it.

[Bobbury in reply to PMRpro]

Thanks. So ive been to the surgery said those words and apparently the practice nurse can organise the scan and will notify me when it’s been arranged. Watch this space!!!Appreciate your help

[DorsetLady PMRGCAuk volunteer in reply to Bobbury]

Good -that sounds easier than in lots of places …