Feeling frustrated and in the dark

[Daisyfield]

Fairly new PMR I've been on steroids almost 3 weeks 15mg and good response.

But my GP hasn't advised re further supplements (vit D or calcium)

She prescribed AA but I have said I want bone scan first and she has requested this but thinks it will be rejected by local hospital as I am apparently high risk (I cannot see why?) and I should be on AA. I don't know how long this referral if it happens will take?

My bloods were normal (Calcium normal)

In Kate Gilberts books it strongly suggests people under 55 with normal bloods should seek referral.

I am currently only on pred. Should I be on Calcium and Vit D? Do I need a blood test for vit D first? Should I be ringing up GP and insisting on this now?

Shoulder pain and leg aches have gone, but I have low grade pelvic pain and also backache. If I walk or swim I feel better for it mentally but muscles feel very achy (not the warm muscle ache of exercise...but the PMR ache of muscles feeling sick and not fuctioning...if you know what I mean). Also feel nauseous and inappetent in the evening .

This illness is having a big impact on my life and I'm prepared to do what it takes to get through it but feel the only thing offered is pred and AA.

[DorsetLady PMRGCAuk volunteer]

Hi,

Excerpt from guidelines re additional medication -

(6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis -

􏰁. Individuals with high fracture risk, e.g. aged over 65 years or prior fragility fracture

􏰀 Bisphosphonate with calcium and vitamin D supplementation

􏰀 DEXA not required

. Other individuals

􏰀 Calcium and vitamin D supplementation when

starting steroid therapy.

􏰀 DEXA scan recommended

􏰀 A bone-sparing agent may be indicated if T-score

is 􏰁1.5 or lower.

. Individuals requiring higher initial steroid dose

􏰀 Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)

As for your pains, are you trying to do too much now that you are on Pred and feel better? All to easy to do.

Have a read of this, if you haven’t already -

healthunlocked.com/pmrgcauk...

[Daisyfield in reply to DorsetLady]

Thank you...I'll show my GP this...I think it shows I do require a scan...I don't know why she said I'm high risk...I'm 51, non smoker, normal weight, a few glasses of wine a week! no family history of osteoporosis, and only one fracture after a nasty fall...healed v quickly and none since.

Our GP has gone on to more phone service after initial exam, and it's hard to push for what you want over the phone. Tend to be talked over a bit.

She was v quick to take bloods and make a diagnosis, but seems reluctant for further tests and advice.

Yes..I might be trying to do what I did before...but do want to keep walking for my bones. Also notice that if I feel stressed about something, my body feels worse.

Thanks again

[PMRpro Ambassador in reply to Daisyfield]

I was 51 when PMR started so exercise a bit restricted for the following 5 years but since diagnosis at 56 and being on pred, after over 7 years of pred my bone density had barely changed at all. I was handed AA together with the pred, took 4 tablets and then discussed it with a different GP who agreed with me that it seemed OTT before I had the dexa result. It would have been a waste and an unecessary exposure to the potential adverse effects.

[Daisyfield in reply to PMRpro]

That's a long time until diagnosis! Looking back, I think it might have been rumbling for about 6months with me...had sciatica (piriformes maybe) while driving and I noticed that I couldn't keep up with daughter walking, and I'm usually the one who charges ahead. Last 6 months felt like battery that can only reach 50% charge.

[PMRpro Ambassador]

Yes, you should be on calcium and vit D and DL has given you the rubric for using AA. You also need your vit D level to be checked - the only way you can know if you are replete is to measure it. Spending a lot of time in the sun is no guarantee and you get next to none from your diet.

You say "calcium normal" - that isn't the normal that Kate means in the context of referral, she means ESR and CRP levels, the usual blood markers for inflammation. The "normal range", figures that apply to a large population (10,000 at least usually) of healthy people, runs for ESR from 1-20 or 1-30 (different opinions, the higher level is older, more up-to-date opinion appreciates above 20 suggests something may be going on). But that is not a normal range for YOU or for ME: my personal normal level is low single figures, a level of 18 would be greatly increased for me but still lie inside the "normal range" by any standards and so would be ignored by most doctors - and it was, delaying any investigation for over 5 years.

[Daisyfield in reply to PMRpro]

Thanks....yes I'll go in after the bank holiday and ask for this.

Sorry...i wasn't clear re bloods...I just mentioned calcium because of measuring calcium levels for supplementation. My inflammatory markers are normal, and in fact v low,

CRP = 1mg/l normal range (0.00 - 10mg/l)

ESR = 7mm/h normal range (5.00-15.00mm/h)

The only abnormalities are slight anaemia and weak positive anti smooth muscle auto antibody with note (doubtful significance) next to it.

Thanks again

[nickm001]

In addition to Calcium and vit D, you will need vit K2 so that the calcium you take goes to bones, not to plug your arteries. K2 can be found in some fermented food, like natto, or you can take suplements