Age/life stage advice pls

[mousebear]

Diagnosed this week, I'm 51. On 15 mg Pred, no pain so will follow tapering advice. Two issues related to my age/life stage would be v helpful:

1) Dr says am to go asap on bone density meds; should I insist on a scan first as am concerned there's no baseline for where I'm at with this at my age.

2) I'm not in menopause, am on progesterone 'mini-pill' (to control migraine, which is a complicating factor when trying to be vigilant re possible GCA, I've just realised). I will discuss this with Dr and don't want to run ahead but when get into menopause, if need HRT, doesn't this protect against oestro?

If I get manage to get through/out other side of PMR, does one have to stay on oestro meds thereafter? I am just concerned re what is known about long-term exposure to these drugs.

I've been blessed with good health so I'm just getting my head round all this, thank you for this forum.

[Celtic PMRGCAuk volunteer]

Yes definitely insist on a DEXA bone density scan first. I was refused a test at the outset, but was so desperate to have a baseline reading that I arranged the test privately - all was well. And all remained well throughout several years on steroids starting at 40mg daily (GCA as well as PMR) WITHOUT any bone protection meds.

Your HRT treatment may provide you with extra protection - another contributor to this forum is/was also on HRT - she also sailed through steroid treatment starting at very high doses without suffering any bone loss.

You should ask for a Vit D blood test as any deficiency can lead to pain similar to that of PMR. Such deficiency can easily be corrected with a short course of high dose Vit D3. Meanwhile, you should have been prescribed calcium +Vit D alongside the steroids, but this won't provide sufficient Vit D if you are, in fact, found to be deficient. If a supplement is needed, then the additional Vit D will ensure that more calcium from your diet is absorbed into your bones, thus providing added protection.

[mousebear in reply to Celtic]

Wow Celtic, thanks for the speedy response! That is so helpful to know, thank you.

[PMRpro Ambassador]

No - insist on a dexascan first, but in the meantime you can start on the bottom end of the "bone protection" meds with calcium and vit D supplements which the GP should provide.

If you go to this: pmr-gca-northeast.org.uk/as...

you will find the BSR Guidelines and in point 6) it says

"Other individuals [i.e. under 65] should have an adequate intake of calcium and vitamin D (Grade C). We recommend co-prescription of calcium and vitamin D supplements when starting corticosteroid therapy. Measurement of BMD to assess fracture risk is recommended in these individuals as well. A bone-sparing agent may be

indicated if T-score is 1.5 or lower."

I was 51 when my PMR started although it wasn't diagnosed/treated for 5 year and 11 years later I still have it - had I been started on alendronic acid immediately I would still be on it and the recommendations are it shouldn't be given for more than 5 years without a break because of the potential longterm side effects. In the meantime I have had a second dexascan after nearly 4 years of pred and the bone density was essentially unchanged - I haven't needed alendronic acid. No problem if it is needed but it really isn't a good idea to give it wily-nilly "just in case" - it has side effects.

Celtic said the rest!

[mousebear in reply to PMRpro]

PMRpro, this is invaluable, thank you so much.

[PMRpro Ambassador in reply to mousebear]

There's a lot more info on the rest of the site that link is to by the way.

[iforget]

I am mid 50's now and when I was diagnosed with PMR two years ago I was on HRT and was already taking calcium and vit D but subsequent dexa scans showed a need for extra protection and I was prescribed alendronic acid. It sat in the cupboard for a while because I did not want to add in yet another med with serious side effects...but I had a minor fall at the end of last year and broke two toes and four bones in my foot which pushed the issue. I am currently on 7mgs pred.

[mousebear]

Many thanks good to know I need to keep open mind about this. Will definately find out more about my BD as part of this. I hope you continue to recover well and thank you.

[Green_girl]

Fully agree with what Celtic and PMR Pro have said.

I have gone back onto HRT just for a few years, but mainly as I'm still having hot flushes - HRT is no longer prescribed just for bone protection - and of course it also has one really nasty side effect - the possibility of cancers. This risk increases with age. You need a full discussion with your GP.

There's a lot to weigh up, but you have to look critically at how you are, how your health is, what your risk factors are (have you smoked? Do you drink?). Stress, smoking, caffeine and excessive alcohol all potentially leach bone. Also don't forget the all-important diet. This is the natural way to help your body recover and keep the bones as strong as possible. Dark green leafy veg (in fact all the veg you can eat steamed or raw), plenty of unprocessed proteins, pulses, beans, oily fish, sardines with bones (not boneless!) etc. Cut out any refined sugars; sugars in fruits are fine, but not juices, as they are too concentrated. If you tolerate dairy go for this too, in moderation - and don't go for fat reduced unless you have a weight issue with the steroids. I think PMR Pro recommends a low carb diet if you do experience horrid weight gain. If you can walk keep it up! Weight bearing exercise is also important as are strong muscles (to help you not to fall), but of course for the PMR sufferer having a body filled with concrete and broken glass (;-/), this is not always easy........

All the above is life-long advice really - as we age, however good our bones are, the ageing body is less able to replace lost bone anyway. Making the changes was all a bore and bind to begin with for me, but seeing how well I am now, why would I stop? Hope you eventually can feel the same!

[mousebear in reply to Green_girl]

Thanks so much Green Girl, this is really empowering. I'm at absolute first step of 'journey' (i.e. 1 wk into working GP diagnosis and Pred). I have a good GP as she is holding off on bone meds until I get ? re: HRT answered from other Dr. and a Dexa scan. As I'm only 51 with no other (?! fingers xd!) health issues, she's also referred me to a Rheumi. Likewise she's let me drop to 12.5 mg from 15mg after just one week, when I showed her recent journal on how initial Pred dosage should take into account light weight (I'm only 50 kg). I know I need to be super vigilant re: slow tapering after this, hopefully, new starting point. Thank you also for the diet advice, goodbye sugar and carbs will be hard but it makes total sense. Thank you again for this wonderful forum.