Alendronic acid

[Caulkhead63]

Do you really need to keep taking those tablets when your managing to reduce your pred successfully? I must admit I don't tend to forget sometimes. Has anyone stopped taking them?

[DorsetLady PMRGCAuk volunteer]

Really depend if you actually need them - do you know the state of your bone health? Did you have a DEXA scan before you started to take them, or do you know if you have osteoporosis?

Taking Pred has the effect of leaching calcium from your bones, so you do need need to replace that calcium- whether by a VitD/Calcium supplement [were you prescribed that at outset along with Pred?], plenty of calcium rich foods, and/or a bisphosphonate [AA or similar].

If you don’t need it, then you can stop it.

Plenty of information about bone health in the FAQs…

[Caulkhead63 in reply to DorsetLady]

Don't think I've ever had a DEXA scan. I had a x-rays on my hands last Tuesday as Dr thinks I have osteoporosis there's a lump below my right thumb just where the wrist starts. I had some blood tests on Friday but my doctor isn't back from leave till Tuesday sorry I meant osteoarthritis!

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

You’d probably know if you’d had a DEXA scan -but this from ROS explains -

A DXA scan is usually carried out by a radiographer, a DXA technician or a specially trained nurse.

You may have to change into a hospital gown before your scan.

Rest assured the procedure isn’t unpleasant. You don’t go into a tunnel, or need an injection.

In most cases, you're asked to lie on your back, on a firm couch. A scanning arm passes over your body and takes an image of your spine and hips - two of the most common places that bones break. You may be asked to move your legs so the machine can reach the right area.

Your results are usually available from your doctor, a few days later.

Sorry to hear about osteoarthritis and hand/thumb. But when you contact GP again might be worth asking about AA and DEXA scan.

I took AA with no problem for 4 years, but I needed it due to family and personal history.. but no point in taking meds you don’t need.

[Caulkhead63 in reply to DorsetLady]

The way you describe it I haven't had a DEXA scan. And yes I will ask my doctor when I speak to her. Thanks

[Holyco]

Definitely do not stop taking it! I had a recent hip replacement and due to another issue my surgeon said I needed to restart the AA which I had stopped after seeing something on here implying you don’t really need it!! I had a MRI on my back (due to the said other issue, which was actually my foot) During the MRI it was discovered I had a T12 fracture. I was then sent for a Dexa scan which I suggest to ask for. Came back all good and my bones were fine. I was advised to continue with the AA for now as steroids can have a terrible effect on your bones AND joints!

[PMRpro Ambassador in reply to Holyco]

"after seeing something on here implying you don’t really need it"

The line here is not that "you don't really need it" but asking IF you really need it which is a very different thing. There are differing levels of bone protection from taking calcium and vit D supplements through various supplements and other medications. I did not take AA from the outset - my bone density barely changed in 13 years of pred at quite substantial doses but other signs suggested a bisphosphonate was advisable at the start of this year. I have embarked on a course of 3 infusions at yearly intervals but otherwise I could have been on AA for all those years for nothing. And that has its own potential adverse effects.

[DorsetLady PMRGCAuk volunteer in reply to Holyco]

I think we always say [well I do because I took it] something along the lines of “do you actually need it” … and that depends on individuals.. as PMRpro has said there are others medications/supplements that are sufficient for many.

For some, the AA has unpleasant effects, and certainly shouldn’t be taken by certain patients with other health issues. Unfortunately they may be dished out without due investigation by some doctors.

We say, please check if you actually need them, and if you do then go ahead. If you don’t require them and your bones are protected by other meds then go down that route.

[Caulkhead63 in reply to DorsetLady]

Thank you that's why I asked. I'll wait till the test results come through and talk to my doctor. I don't want to take a pill for years if I don't really need to

[piglette in reply to Caulkhead63]

I totally agree with you. If a Dexascan says you have good strong bones, then you should not need AA. Steroids can reduce bone strength, but not always. I feel everyone should have their bones checked before they are prescribed AA, but some doctors seem to think you should give it just in case.

[Sophiestree in reply to Holyco]

what a worry. Do you recall doing anything re the T12 fracture? It's good news that your Dexa was ok but puzzling for you if you don't know how the T12 happened. If the Dexa was good then you shouldn't need the AA though? I have poor osteoporosis but couldn't get on with AA. After diagnosis of LVV like PMRPro I had Zolendronic infusions.

[Holyco in reply to Sophiestree]

Hello. Yes I was worried when the T12 showed up on the MRI! I had no idea. I have suffered with back pain for many years but mostly it’s ok. After my orthopaedic surgeon requested the Dexa scan as he was concerned that I may suffer from more breaks if my bones are weak. Luckily bones are fine 😃 I had my first hip replacement in December 23 and 3 months after I fell down the stairs! Thankfully no damage 😬. It’s looking now like it could have been caused by the fall. I will be seeing the specialist in a few weeks and hopefully can completely come of the AA. I can hold on for a few more weeks mainly as my Dr told me the Steroids play havoc with joints. I’m now down to just 4mg for my PMR which I was diagnosed with : years ago. My GP feels going down 1mg per month should be ok. The rheumatologist I saw maybe a year ago feels it has probably gone and to slowly come off and see what happens. Fingers crossed as I really hate this steroid taking. Hope your feeling ok at present 😩

[PMRpro Ambassador in reply to Holyco]

I've been on pred for 15 years - my joints are all fine. No sign of any OA which is what they claim.

[Holyco in reply to PMRpro]

That’s all well and good for you. Lots of others are not as lucky. I have this from not only my GP but also the rheumatologist and Surgeon who performed 2 hip replacements in the last 6 months. My knees have now acquired Arthritis and I will need a knee replacement maybe both.

[PMRpro Ambassador in reply to Holyco]

What I was trying to say is that there are many of us who have been on pred for a long time and it hasn't happened. Like cataracts - some get them, some don't. And most patients with OA were never on pred. It isn't a given.

[Holyco in reply to PMRpro]

Yes I appreciate what you are trying to say however for me I feel the Pred has not helped as in the last 2+ years (I’ve been on Pred for 3) I have had to have a hip replacement which was not down to the Pred as I had osteoarthritis before however since that hip replacement in December my other hip completely Collapsed a few weeks after! It was ok ish before and caused me little problems. I for one do not want to go against the experts have advised as it’s so not worth the risk! Pred helped me so much when first diagnosed with PMR however I want to preserve my bones from any other dangers and hopefully come off the Pred in the next few months.

[Numptybrain]

I’m on allendronic and I have osteoporosis, had 2 bilateral L5/s1 fractures and 2 rib fractures, trust me the fractures are extremely painful. I wouldn’t dare stop taking it plus I take supplements. I did have a Dexa scan. I’m quite surprised you’re GP giving you theme without a scan .

Take care

Wendy xx

[Caulkhead63]

I've hardly seen my GP since I was told I had it in 2022! I've had to push for blood pressure checks. And that was on the advice from my chap I'm seeing for my high cholesterol levels at my hospital he was extremely surprised I wasn't having them regularly

[PMRpro Ambassador in reply to Caulkhead63]

The pharmacist often offers BP checks in the shop so worth asking. And a BP cuff of your own is very useful.

[Caulkhead63 in reply to PMRpro]

Thanks I'll do that

[Missus835]

Wish I had been able to tolerate it and a year after the rheumy tells me I have osteoporosis not osteopenia. She decided a year too late to do a Zoledronic Acid infusion. I now have severe osteoporosis from the Pred and 10 vertebral fractures. Get a dexascan. If you need it and can tolerate it, take the AA. Hindsight 20/20 sort of.

[Caulkhead63 in reply to Missus835]

Thanks I'll ask my doctor about the scan

[lennysmummy]

I’m booked for Alendronic infusions in the coming weeks. I have no idea whether I should take it or not. I don’t want to take something I don’t need. I don’t see my rheumatologist now until January. No dexa scan either.