Osteopenia/AA

[90planetree]

Hi everyone...could some of you offer advice on my DEXA scan before Christmas: normal bone mineral density in the spine with a T-score of 1.8 and osteopenia in the hip with a T score total mean of -1.7. XR thoracic spine on 01/04/21: there is mild diffuse osteopenia. Vertebral bodies and intervertebral discs show normal height. In her letter after DEXA scan rheumatologist recommended no change to therapy of calcium and vitamin D alongside AA 70mg weekly. I stopped the AA when I was quite poorly some weeks ago with head, ears, jaw & throat problems which I still have but not as bad now. I know you can’t offer medical advice but I would like some opinions please in the light of my results. I am of slim build.

Thanks so much.

[PMRpro Ambassador]

If it were me I would be discussing not restarting the AA although you are sort of borderline for being put on it - -1.6 is the guideline t-score. You will meet resistance though. The spinal result is good and there are a lot of things to do to reduce any risk to the hip in a fall like good lighting, removal of trip hazards,wearing house shoes not sloppy slippers, good diet, keeping vit D levels high, not allowing yourself to become dehydrated and keeping muscle tone and fitness as good as possible.

Heron NS improved her hip reading from lower t-scores than that just by diet, supplements and exercise with a weighted vest:

healthunlocked.com/pmrgcauk...

Do you think those problems were directly associated with the AA?

[90planetree in reply to PMRpro]

Thanks PMRpro for your reply. I don’t know really where the symptoms came from but it scared me when I read the leaflet with the AA! Thanks for link I will read through that. It would be good to stop the osteopenia from progressing with the methods you have suggested & I would consider a weighted vest. Thanks again.

[piglette]

I assume you mean your T-score is -1.8 not +1.8!!

[90planetree in reply to piglette]

The 1.8 is just that on letter, it doesn't say - or + .

[piglette in reply to 90planetree]

If it really is +1.8 it is a pretty good result, it sounds like they may have left the minus off though.

[90planetree in reply to piglette]

Yes I thought that piglette, I will check that out!

[Zebedee44]

Hello 90planetree, I’m glad I read your post which made me think about the side effects of taking AA which I have only recently started after over 4 years of PMR.

I’m waiting for the results of my recent DEXA scan arranged by my new GP (bless him he has really got the ball rolling since I moved to his practice area) but the old GP had prescribed AA just before that and I hadn’t joined the dots until I read your post and thought about my increased jaw pain, sore throat and chest pain / heartburn.

I won’t be taking any more Alendronic acid until I get the result and then I will discuss it with my new GP. I have PMR but not GCA and stuck at 8mg , suffering a post vaccine headache today and fed up with the complications that go with having an autoimmune condition which makes us appear well when in fact we often feel like rubbish.

[90planetree in reply to Zebedee44]

Hi Zebedee44...Thanks for your reply. I hope your DEXA scan proves to be okay, sounds like you have another to compare it with! Yes my jaw, sore throat & ears were very painful & seemed to come out of the blue. I was also struggling to eat, only managing soft foods! I don't particularly want to go back on the AA but I have telephone appointment with registrar/rheumy in June so will discuss. Did you ever find out what the jaw pain was? I went to dentist who told me they have a lot of problems with patients on AA. I had a mouthguard made which I am persevering with overnight (not easy) as I must be grinding my teeth,

according to dentist. I am fed up, like you, with all the extras we keep getting with this awful disease and I haven't reached one year as yet. The registrar/rheumy did also include inflammatory arthritis with my diagnosis of PMR.

[Zebedee44 in reply to 90planetree]

Hi planetree, even before I started AA I have reported jaw pain throughout my years with PMR and without claudication (difficulty chewing) it is considered unlikely to be GCA.Thats a blessing but doesn’t help me know what is causing it.

The dentist hasn’t mentioned grinding my teeth or a mouth guard but I think I am probably inclined to clench my jaw. Do you find It’s worse in cold weather ?

The sore throat, chest pain and mouth ulcer are far more recent and seem to be more likely to be the AA, so I am hoping I won’t need to continue it when the result comes. Next week I guess.

[PMRpro Ambassador in reply to Zebedee44]

There are other options besides AA

[Zebedee44 in reply to PMRpro]

Thank you PMRpro. Anything you can recommend that I could ask the doctor for instead, once I get the scan result?

[PMRpro Ambassador in reply to Zebedee44]

They know what they are allowed to use. Oral risendronate seems to have fewer gastric problems for most people. It is also once a week.

nhs.uk/medicines/risedronate/

There are also monthly oral bisphosphonates (ibandronate), annual infusions (zolenronic acid), 2x annual injections (denosumab) or daily injections (teriparatide, not used a lot). Needless to say, the price rises as you go through the list ...

NICE says

"The oral bisphosphonates alendronic acid or risedronate sodium are first-line treatment options. Zoledronic acid, denosumab or teriparatide are alternative options in patients intolerant of oral bisphosphonates or in whom they are unsuitable."

(sorry can't give you the link as it won't come up for me here)

[90planetree in reply to Zebedee44]

Hi Zebedee44...No I haven't noticed anything to do with the weather & my jaw but I think it has improved somewhat but not back to normal yet! A friend has also had a jaw problem (no PMR) & her doctor diagnosed facial neuralgia & has put her on a drugprescribed for seizures which hasn't suited her but, when she tries to reduce, the pain

difficulty chewing etc comes back!

[Zebedee44 in reply to 90planetree]

Well it might be the coincidence of the sudden warm weather but I haven’t suffered jaw pain or heartburn this week having not taken the AA on Sunday. And no mouth ulcer either. I should get the DEXA scan result this week and will know how to proceed.

I was also treated for facial neuralgia many years ago and still suffer pain across the cheek to my nose at times. I attended a pain clinic, had a surgical procedure on my nose, was prescribed tegretol which I couldn’t tolerate, nothing helped.

To be honest I hadn’t connected the two conditions but I do think there is a certain amount of “stress” underlying them both.

I do hope you continue to improve and thank you for the heads up ( as the young say these days).

[PMRpro Ambassador in reply to Zebedee44]

Oral ulceration is a known, albeit rare, adverse effect of bisphosphonates

pubmed.ncbi.nlm.nih.gov/264...

[Zebedee44 in reply to PMRpro]

Thank you PMRpro, very helpful. I thought my mouth ulcer had gone but it’s still there in the same place after all. Would that indicate oesophageal ulcers too?

[PMRpro Ambassador in reply to Zebedee44]

Honestly don't know - it isn't entirely clear to me whether it may be a systemic problem as well as a contact risk - it does sound as if they feel it is bad technique taking the pills when it comes to the oesophageal ulcers, not taking enough liquid and swallowing/reflux problems for example, but surely noone would hold AA tablets in their mouth that long????

[Zebedee44 in reply to PMRpro]

Thank you. Yes I read that it is usually the swallowing method but I have done exactly what it says on the package with a large glass of water etc etc. I just hope the dexa result means I don’t have to take a bisphosphonate.

[PMRpro Ambassador in reply to Zebedee44]

Being of a VERY cynical nature, I suspect the pro-Fosamax/AA cohort didn't want nastier side effects to be ascribed to it so blaming the patient for not doing things right was a popular get-out ...

[Zebedee44 in reply to PMRpro]

I’m delighted to report that my dexa scan result is in the normal range for the spine and shows osteopenia in the hips, just like 90planetree. To be repeated in two years . The lovely new GP has agreed that I need not continue with the AA. Result!

[PMRpro Ambassador in reply to Zebedee44]

Excellent!!!! But don't forget plenty of vit D!

[90planetree in reply to Zebedee44]

That's good news Zebedee & yes seems similar to mine! PMRpro mentions plenty of vit D. How much should we be taking orally PMRpro? I am taking the Calci-D twice daily & assume that is enough? Thank you.

[PMRpro Ambassador in reply to 90planetree]

The calcium/vit D supplement is the bare minimum for vit D. Personally I take 4000 IU a day all year round as without it my blood vit D level slowly falls and eventually gets back to depleted levels (I no longer take the calcium as it was causing bladder problems). The local osteoporosis guru says at least 2000 IU for everyone all year - there is a high rate of vit D depletion here despite living at a latitude that allows production of vit D in the skin almost all year round, not just May to September as in the UK. That is probably because it is plain too hot in the summer to be out there at midday and too cold in the winter! And those who are out in the sun because of work or sport have very dark tans which also affects production of vit D!

As you age the effectiveness of the skin production of vit D falls - to a quarter of what it is at 20 by the time you are 65. And you get very little from food.

[PMRpro Ambassador in reply to 90planetree]

You might find this interesting:

womenshealthnetwork.com/nut...

[90planetree in reply to PMRpro]

Thanks for info PMRpro...interesting! You said you have stopped the calcium because of bladder problems. I have been diagnosed by uro-gynaecologist with irritable bladder a few weeks ago but I put this down to age (72) although it’s something new & no problems before PMR was diagnosed! Any thoughts? She has given me a chart & asked that I note my fluid in and out, haven’t started to do it as yet.

[PMRpro Ambassador in reply to 90planetree]

In my case I assume the calcium supplement led to grit forming in the urine - causing irritable bladder symptoms. I stopped the calcium carbonate - and ate more cheese/dairy and the bladder problems improved, I'm not the only person. jinasc developed psuedogout and gall stones - also almost certainly due to the calcium supplements.

[Zebedee44]

I hardly dare admit to having been very slack about taking the calcichew because I suffered cystitis/ infected bladder for month after month when I first started taking it.

So I feel I have been rather lucky to have got away with not taking AA or regular vit D/ calcium for over 4 years and still having acceptable bone quality. I put this down to my outside life with my driving pony and dogs. I’m having to wear a big straw hat on sunny days to avoid keratosis on my face but I guess I get whatever vitamin D is available all year round.

And I read on the recent bottle of calcichew I was prescribed when I started AA 9 weeks ago (now stopped) that I shouldn’t take the supplement on the day I took the Alendronic, never knew that!