I am a little anxious as I am 47 years old peri menopausal, and now on Steroids, and I am also Lactose Intolerant so avoid Dairy. I notice a lot of you seem to have trouble getting Dexa scans. The only treatment I've been given so far is Calcium + Vit D supplements, is this sufficient or should I have a base line scan. Most articles I read say that most bone loss due to steroids happens in the earlier part of treatment. I am already 9 weeks into treatment so worried I could already be potentially losing bone density.
Thanks Runrig
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Runrig01
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I am also at high risk of osteoporosis, and have not had DEXA scan, but I am on Alendronic Acid 70mg tablets (group of medicines known as bisphosphonates which prevent bone loss). Suggest you ask your GP. Tablets are taken once a week. Best wishes. Dorset Lady.
Yes, our bones are at most risk from the steroids in the first 3 months or so which is the reason that Calcium + Vit D supplements are prescribed alongside Pred.
Knowing the possible risk to my bones, I requested a DEXA scan at the outset as I'd never had one and wanted to have a baseline reading. Both GP and rheumy refused, saying that there was a 9-month waiting list anyway! I decided to arrange a private DEXA and the result showed normal bone density for both my hips and spine. Two years into steroids, I decided to be cheeky and ask for another DEXA and to my surprise this time it was agreed. This time the result was normal hips but osteopenia of the spine (the stage before osteoporosis) and it would appear that the high dose steroids were to blame. I had a third DEXA another 2 years down the line last summer following a long period on a very low steroid dose and there had just been a tiny worsening in the spine but still within the osteopenia rather than the osteoporosis range. I was never prescribed calcium supplements as both the rheumy and GP thought the other one had prescribed it (luckily, with hindsight, as I have since learnt it could have been detrimental to my sole kidney) but did have a lot of calcium in my diet, plus a lot of oily fish.
It is also a good idea to ask for a Vitamin D blood test as any deficiency can lead to pains in muscles and other health problems. I have just been found to be deficient (like many of the population it would seem) and have started taking a quite hefty supplement for the next 3 months. If anyone is deficient, they need a few months on a large Vit D3 supplement - the Calcium + Vit D supplement alone won't be enough to raise the levels to normal.
I thought AA pills were only prescribed when someone has been found to have bone loss following a DEXA scan? I know the latest recommendation is that if anyone takes it they should have a break from it after about 5 years.
I was prescribed AA tabs because I had hysterectomy aged 37 (I am now 65) and therefore at high risk of osteoporosis. I also started on 80mg of prednisolone due to loss of sight in one eye, so my case may not be typical. But whose is?
I know from my Nursing background that Biphosphonates are allowed to be prescribed in patients already known to be high risk, without the need for a Dexa scan. The doctors on my ward regularly prescribe for patients in the elderly age group, with risk of falls etc. However Im not sure GPs prescribe to patients before they are actually menopausal, as i say at the moment I am only going through the transition. It is becoming mandatory that GPs complete an online assessment tool known as FRAX, which will indicate if the patient needs a Dexa scan. I may consider having a private scan organised if GP says I do not meet the critera, as you seem to have done Celtic.
As soon as I was put on 40mg of steroid for GCA 4yrs ago aged 45 I was also put on Alendronic acid and adcal. I had a base line dexa scan and already had osteopenia of the hips and spine and have just had follow up scan which shows no worsening in the hips but the spine is worse. My mother had osteoporosis so it's in the family.
I also went through the menopause when I was 42 and I'm not on HRT or anything for this. I was found to be anaemic and am on folic acid and this helps with the sweats.
I am interested to see if I should have a blood test for vitamin D deficiency and wonder if anyone has any comments on this or is taking adcal supplements enough? Thanks Deb
I think it would be very wise to ask for a Vit D blood test - if you are found to be deficient then there won't be enough natural Vit D in the body to aid the absorption of calcium from your food. The calcium + Vit D medication is not sufficient to restore Vit D deficiency levels to normal - a pure Vit D3 supplement is needed.
I read an article yesterday that said Prednisolone interferes with the way our natural Vitamin D works in our bodies, thereby reducing the calcium needed by our bones. This is why we are prescribed calcium + Vit D meds, but I hadn't realised the Vit D angle before.
I have also had an under active thyroid for 23yrs and have been on a consistant dose of 225mcg for the last 15yrs. During a spell in hospital last July they found that I was on too high a dose and reduced it and during the last 6mths I have come right down to 150mcg and feel terrible. I have been on steroids for 4yrs so I really don't know what is going on & the GP says that this happens sometimes.
I will ask the GP about a blood test for Vit D next time, so thank you.
I am unable to take Alendronic Acid so am on a daily dose of Strontium Ranelate. I have had a Dexa scan recently which found some thinning of the top of one femur but the spine is OK. I also take the Adcal tablets.
Hi Runrig and anybody else under 55 (and especially if you are under 50). This isn't an 'official' position but I am strongly of the view that anybody who gets PMR or GCA under the age of 55 should be regarded as 'atypical' and referred to a specialist rheumatology unit. For one reason, the diagnosis might be in question. Do ask for a referral if you haven't already been referred.
I have already been attending a Consultant Rheumatologist for the last 6 months, and she has undertaken lots of blood tests and scans before diagnosing me as "atypical Polymyalgia". She herself was sceptical to diagnose because of my age, despite having all the classic symptoms. It is only when in December she decided to do a trial of Prednisolone and had relief within 4 hours that she has confirmed the diagnosis. I continue seeing her every 2 months,
I have also been under a specialist rheumatologist. When I was first diagnosed they were sceptical but since I have been referred to the consultant that specialises in this area. Also this as been in conjunction with the consultant opthalmologist, both of which I continue to see every 6months.
Because of my age I have been constantly back and forth to different consultants but he now agrees I am atypical GCA and now PMR.
Blood tests and steroid relief and a really good "chat" with the specialist rheumatologist has confirmed diagnosis.
Managed to get a private Dexa scan today for a mere £60. Best money well spent. My concern is that it shows I have a T score of -1.91 in the femoral neck, and being only 47 this concerns me, as I am quite Osteopenic. I am seeing my GP in 12 days, would you think this should be treated with medication?. I am Lactose intolerant so cannot eat dairy, and I am already taking Adcal D3. Most medications seem to be geared to post-menopausal women, I am peri-menopausal. I am currently taking 9mgs of Prednisolone. Concerned
Please read the Management of Glucosorticoid induced osteoporosis, this indicates if you are taking oral steroids you should have a DXA scan, especially in light that you are peri menopausal. The National osteoporosis (NOS) is a good place to start with queries and advice on maintaining bone health.
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