alendronic acid pmr-like side effects

[1234v]

Painful muscles and joints are listed as a common side effect of alendronate, but I haven't seen much discussion of it on this forum. I've been on prednisone for PMR since early May, 2020 and am down to 3mg. Declining bone density showed up on DEXA scan this winter and my rheumatologist recommended going on alendronate. I'm not yet at the osteoporosis stage but it was a big drop since 3 years prior. I seem to notice a flare in PMR-like symptoms with the weekly alendronate, which subsides over the course of the week until I take the next dose. Rheumy thinks I have rotator cuff tendonitis, but this new pain coincides with the start of alendronate and has not gotten better with 6 weeks rest and gentle exercise. Pain has caused me to stop tapering the prednisone, so now I seem to be in a nasty feedback loop with the two drugs. Considering going off the alendronate despite doctor's advice. Anybody else dealing with this situation? Thanks!

[PMRrunner]

I had flu-like symptoms for the couple of days after taking alendronic acid each week. My rheumatologist at the time said it was a known side effect but there were other options if it continued.

[DorsetLady PMRGCAuk volunteer]

Discuss other options to AA with doctor - there are 6 monthly/annual infusions which may suit you better.

But check you really do need this drug - declining bone density doesn’t always lead to osteoporosis or osteopenia.

Are you on a VitaminD/Calcium supplement? Many find that is enough protection, and there are plenty of bone strength exercises.

If you can recall your DEXA scan scores - we may be able to offer more advice.

And would helpful if you put a bit info on your profile please - particularly country of residence.

[1234v in reply to DorsetLady]

Thanks Dorset Lady. My DEXA score went from -1.4 in 2018 to -1.9 now for spine and -1.5 in 2018 to -2.0 now for hip. That seemed like a pretty dramatic drop, which is why I agreed to try the alendronate. I am on Ca and vitamin D supplements and exercise regularly - that was all working to maintain bones until the prednisone came along. So I don't think I need infusions as an option - I just need to get off prednisone! I will add more on my profile too - thanks for the reminder.

[DorsetLady PMRGCAuk volunteer in reply to 1234v]

The World Health Organization (WHO) classifies T scores as follows:* above -1 SD is normal

* between -1 and -2.5 SD is defined as mildly reduced bone mineral density (BMD) compared with peak bone mass (PBM)

* at or below -2.5 SD is defined as osteoporosis

So you are in the mid range....was there any recommendation on the DEXA report?

Couple of links for info -

nof.org

americanbonehealth.org

Plus a couple of forums on HU -

healthunlocked.com/search/c...

[Maisie1958]

Hi, was given AA when started on prednisolone for PMR- I seemed to get actually joint pains in wrists and knees the day after I took it as well as pain in lower legs, don’t think I was imagining it. Stopped it after 6 weeks or so and tried Risedronate, no joint pain but heart burn. Have just dodged the situation since but best not to do what I did. There’s people on here that have improved their dexascan scores using diet/exercise/supplements and the Royal Osteoporosis Society is very helpful but that’s UK. All good wishes.

[PMRpro Ambassador]

Many of us don't take alendronate - and most of those who do have had no problem with it. As the others say - it is worth trying one of the alternatives if you really do need something. You are right, that is a big change in bone density - but relying on being off pred isn't the answer, that could be a while yet. Only when the PMR is burnt out will you be able to stop it - and immobility due to pain isn't conducive to avoiding osteoporosis.

[AdoptMeow]

Taking a drug to slow bone loss is only part of an approach to improve bone density. New bone cannot be formed without an adequate daily supply of the ingredients--calcium, magnesium, and vitamins D3 and K. Calcium carbonate requires an acidic stomach and is not utilized as effectively as other forms, such as calcium citrate (which doesn't require as much acid for digestion). Other minerals are needed also, but they are usually supplied by a normal diet.

[Aureliaaa]

I developed tracheobronchial osteochondroplastica, about 2 years after taking alendronate. This is bony growths in my trachea and is rare and benign but can affect your breathing. Of course I am not sure if they are linked.

[PMRpro Ambassador in reply to Aureliaaa]

You already said that yesterday - the post is immediately above this one!! Do you have PMR? Do you take steroids?

[Aureliaaa in reply to PMRpro]

Ah yes did t realise it went I twic. I have deleted it. I take a steroid inhaler for asthma. I don’t have pmr.