Painful shoulder blade.

[Pandora2]

I posted last week asking for help choosing osteoporosis/osteopenia treatments. Everyone was so kind and I was offered lots of experience and advice, thank you all. I had already taken my first dose of Alendronic acid and was having a reaction to it in the form of shoulder blade pain. 8 days later I still have the pain and am needing to take 60 mg of Dihydracodeine to be comfortable at least twice daily as well as applying heat pads regularly . I have discontinued the AA and have an appointment on Thursday to see a doctor. Just wondering if anyone has any similar experience with this drug. X

[jinasc]

Please visit the Royal National Osteoporosis website theros.org.uk website and read up on the alternatives to bio- phosonates not just AA. The reps did a good sales job on GPs.

BTW have they checked for Rotator Cuff Injury?

[Pandora2 in reply to jinasc]

Thank you I’ll look at the website, I haven’t had any check yet, going to drs on Thursday but found a couple of reports on line about AA being the cause of similar problems,. X

[jinasc in reply to Pandora2]

Ask for a Dexa Scan to check your bone density see if you really need a bio - or is it a what I call 'a just in case.

[Pandora2 in reply to jinasc]

Thank you Jinasc, I’ve already had a scan which showed osteopenia, nothing below -1.6 and a few pluses. Just wanted to hear any others who may have had the shoulder blade problem as it’s a bit worrying not to mention damn painful. X

[jinasc in reply to Pandora2]

That is why I wondered about Rotator Cuff.

Hopefully you will can find a solution and some relief.

[Rebecca6]

I took it for 2 years but worried about the adverse effects I just stopped, relying on Vit D and K. Doctors not pleased , dexa scan showed osteoporosis had got worse . I did take Calcium but not the AA alternative. When I googled it found account of woman with acid reflux took it with Nexum and ended up in a wheelchair! Not sure what the lesson is from my experience but it is what it is. Hopefully others more useful. All the best.

[Pandora2 in reply to Rebecca6]

Thank youRebecca6….. No one seems to speak favourably of AA so I’m glad I’ve already stopped it. Don’t know what docs reaction will be when I tell him, they seem to be pretty quick to get you taking it, maybe it’s cheap like Pred, so doesn’t damage the surgery budget too much. Nice of you to give me the benefit of your experience,,. X

[DorsetLady PMRGCAuk volunteer in reply to Pandora2]

“No one seems to speak favourably of AA..”Not strictly true, I took it for 4 years with no problems whatsoever ….but would agree why take it if you don’t need it. But some do need it…

[Pandora2 in reply to DorsetLady]

I suppose it had to be useful for some or it wouldn’t have satisfied NICE. I’m glad you found a helpful treatment. Do you still take or have you moved on?

[DorsetLady PMRGCAuk volunteer in reply to Pandora2]

Stopped taking it in 2016 - six months before I reached zero Pred - and GCA in remission.

DEXA scan done in 2017 was okay….but recommended I remain on ViTD/Calcium supplement - which I have…

[Pandora2 in reply to DorsetLady]

Well done on beating this accursed condition, and GCA too! Hope you can now enjoy the benefits of a healthier life. X

[DorsetLady PMRGCAuk volunteer in reply to Pandora2]

Doing my best - healthunlocked.com/pmrgcauk...

[Pandora2 in reply to DorsetLady]

Hi……. I followed your link and am full of admiration for your fortitude in surviving your journey through your long illness. I have just finished reading the book by Kate Gilbert PhD, so had learned something of what you must have gone through, and the urgency of diagnosing and prescribing Pred in order to save precious sight. I also went on to theDaily Mail article which I suspect I read when first published.I actually diagnosed my own PMR in the absence of doctors appointments during COVID, which was confirmed 3 Months later after blood test delays. I thank God I haven’t got GCA , I would almost certainly have been blind if that had been the case .

Long may you enjoy the life that you have built in spite of all your long suffering. X

[PMRpro Ambassador in reply to Pandora2]

There is a place for its use - but it isn't at the t-scores you appear to have of -1.6 which is actually the borderline for needing something according to most experts. Mine has reached that after 11 years on pred - never taken AA except the first 4 tablets I was given. Then a different doctor agreed with my reluctance until I had a dexascan and it was fine.

[Pandora2]

Thank youPMRpro, I had already taken my first dose before managing to get the numbers from the doctors. After researching the subject I came to the same conclusion as you.I’m considering discussing HRT with doctor when I see him. X

[HeronNS in reply to Pandora2]

Kind of late coming to this thread, but your -1.6 t-score interested me. It was my bone density improving to -1.6 (from -2, without medication) which changed recommendation for me from supposedly needing medication to no medication recommended.

[Pandora2 in reply to HeronNS]

That sounds very encouraging..Thank you. X