PMR/Prednisolone/Alendronic Acid

[Blacksley]

Thank you all for your posts and will now try to reduce even more slowly. !5 mg of Prednisolone was not enough, so have now increased to 17.5mg and are again keeping fingers crossed. Would welcome views on long term (nearly 5 years) usage of Alendronic acid (I am male 79 years old) as I think that in the past I have seen posts expressing concerns.

[Sophiestree]

I think 5 years is about the standard time to take them as ironically after a certain length of time they can have the opposite effect than their intended purpose. Have you had a dexa scan lately?Sorry to hear about the flare, hopefully the increased dose will do the trick.

[PMRpro Ambassador]

After 3 to 5 years they recommend a "drug holiday" for a year (I think)

[Smithie49]

Hi Blacksley. I saw my rheumy yesterday and she is really pushing me to take either alendronic acid or ris....... (or whatever it's called.) As I have reflux and some difficulty swallowing she recommended the latter as the tablets are smaller. I have really resisted taking these as the reports of the side effects are dire but my dexa scan showed osteoporosis of my spine and osteopoena in my hips. So I've spent a sleepless night trying to decide what to do. Good luck with your decision.

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

Name is - risedronate….

As you have reflux issues why hasn’t she suggestion infusions like Zolendronic Acid?

[PMRpro Ambassador in reply to DorsetLady]

Snap ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Great minds….😊

[Smithie49 in reply to DorsetLady]

Thanks for your reply. She mentioned that but settled for the risedronate. What side effect does the infusion have, if any?She is also adding methotrexate as I've been on pred for over 2 years but has asked for a load of test on my blood before I start. She is very thorough and I do have confidence in her advice. It's just the effects of an or ris that worry me.

[PMRpro Ambassador in reply to Smithie49]

What dose of pred are you on after 2 years? She scores a minus mark in my book I fear - PMR lasts longer than 2 years and MTX has its place but there are caveats. If it were that good they would use it from the start - they don't.

[Smithie49 in reply to PMRpro]

I'm on 7mg at present. I've flared when I've tried to get below that 😞

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

How have you tried to reduce? Very slow taper and only 0.5mg a time -or more aggressively?

[Smithie49 in reply to DorsetLady]

Yes. Took your advice and bought a pill cutter. Was OK ish on 6.5 which I stayed on for 5 weeks. Then 6 mg back came the stiffness with a vengeance!!!

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

Perhaps you need to stay at each dose for longer -some do…and better that than flare and have to go back up - that makes you feel despondent.

[PMRpro Ambassador in reply to Smithie49]

Then I would be reluctant to add in MTX. Stuck at 10mg after only 2 years is one thing, down to 7mg is another. It doesn't necessarily work and has its own downsides - it DOES work very well for a small group of patients so it is worth trying but if it makes you unwell, feel able to say no.

[Smithie49 in reply to PMRpro]

Many thanks. I will do

[DorsetLady PMRGCAuk volunteer in reply to Smithie49]

Have a look at this for more info, they have a helpline as well -

theros.org.uk

[Smithie49 in reply to DorsetLady]

Thanks again. Before I had the dexa scan the GP was aggressively pushing AA on to me. I then got in touch with the ROS and the lady I spoke to was very helpful. She was the one who advised me to reduce the amount of yoghurt I was then eating - I was consuming 3 x 500g pots fat free natural yoghurt at the time!!!! I'm now on just the one pot a day . She went through the benefits of the different bisphonates. I've added D3 and K2 since then on advice from here which I wasn't before. I wish I could have a peep internally and see what was doing good and what wasn't 😀

[PMRpro Ambassador in reply to Smithie49]

Actually, if you already have reflux AND difficulty swallowing, neither are ideal. She should be offering an annual infusion of a bisphosphonate or denosumab which is 6 monthly injections. The annual infusion is zolendronic acid - used quite a lot.

[Orange_2022 in reply to Smithie49]

I was also very concerned about taking Alendronic Acid although once I'd had a Dexa scan (6 months after starting Pred and at my request after GP kept telling me to take AA), I realised I might need it.

I think it was Dorset Lady who previously mentioned the Royal Osteoporosis Society and I gave them a call on their helpline which was very reassuring. I'm taking the AA and no issues 4 months in....