Since being on steroids, have you had a bone scan? - PMRGCAuk
Since being on steroids, have you had a bone scan?
I requested but was refused a bone scan by both my GP and my rheumy at the outset of steroid treatment, with both saying that there was a 7-9 month waiting list.
I arranged a private scan as I wished to have a baseline reading - that was normal.
Two years later, I requested another scan and this time it was agreed by the rheumy - result osteopenia.
Another two years later, my GP reluctantly agreed to my request for a third scan, adding that if I went ahead with this one, there would definitely not be a repeat scan for another 3 years. I was anxious to know whether the osteopenia had progressed to osteoporosis. Fortunately it had only slightly deteriorated and was still within the osteopenia range after 5+ years on steroids.
my GP says I don't need a bone scan as I am taking calcium and vit D and acid tablets - hope this is correct.
Rosalinda
LizML!
I saw a rheumatologist privately and he said that there was no point in a DXA scan as I am of an age (he meant over 75 I believe) when "everybody has osteoporosis, so I'll start you on Allendronic Acid straight away". I asked for a scan and he then agreed. The result was from my GP : "you have the bones of a woman half your age and your spine is better than mine". So I would have been put on a medication for whcih I had no need.
I was scanned about 3 months after diagnosis. Had already been taking alendronic acid and calcium as per my good GP. Hospital wrote that I had a much higher bone density than women of my age and that I should be taken off the meds for bone thinning and scanned again when I am down to 5mg pred. As I have been going the other way on preds - up rather than down - I will push for another scan when I aught to have reached 5mgs pred, but obviously won't have, because by that time I will have been on more pred than the hospital gives in their pred guideline.
Jani,
Your remark about the guideline given by your hospital reguarding time on pred. Can you elaborate please. It has intrigued me.
Pats
OK Pats. I'll try to keep this as short as possible.I have the hospital chart in front of me. Started 15mg daily on 24.02.2012 for one week only then down to 10mg for one month. thats all of March. Months 2 and 3, April and May10mg/7.5 mg on alternate days. My arms started up with big time pain in June when I was on 7.5 daily and I was unable to use them without weeping, so GP suggested I go up 5mg. I was reluctant, went up 2.5 but realised I was in real arm trouble after one week and went up to 12.5 without her having to tell me. This is where I have remained as I have only just got control of the arms about 2 weeks ago. I will remain at 12.5 for another 2 weeks then drop to 10. That will be a scary time. By my reckoning it will take me until Mid February, dropping by 1mg per calendar month to reach 5mg, barring other painful PMR things intervening, which might again preclude me from dropping a dose. I hope you are understanding this - it would be helpful if I was numerate, but - I think I might have it right. Back to the hospital chart again - if I had been able to follow their chart I should have been at 5mg daily in October this year. And by then I will have taken rather more pred than they recommended. So I am going to request that I am scanned again in November this year, when I will be at the pred point I might have been had I been able to follow their chart. Thats obviously the point that they think I might be showing symptoms of mouse cheese bones. The new rheumy tells me that the hospital is now following national guidelines and dropping pred more slowly - looking at this it was mightly quick at the beginning, wasn't it, but I didn't understand any of that then. By their chart I should have finished in May. By my reckoning and being on the higher daily dose it should now be October 2013 if I keep going without any misfortune. Hope this is what you wanted. Let me know if it hasn't been clear and I'll try to help. Jani
Jani, thanks for your comprehensive reply,
Thanks to our lucky stars that the ,so called , professionals are now following the guidelines set by science.
Lets get to grips with this illness. PMR has, in the past , been largely undiagnosed and, when it finally was, it was "a disease of elderly females" and therefore just part of the aging process. Check our members' stories to see how wrong that evaluation was.
Prednisolone does NOT cure PMR. It 's role is to get rid of the pain as much as possible. We are all individuals when dealing with this illness and, therefore, our drug regime has to be tailor made for each one of us. These are the guidelines that Rheumies and GPs are supposed to follow now.
My own GP said he wanted me off pred ASAP because he didn't think I had PMR. The GP who gave me pred was pretty sure I had PMR and she was right, but that didn't stop me coming down on pred like a rocket. I went from 30mg to 3mg in 7 weeks. Then I saw my first rheumy, now retired, he was pretty horrified at the rapid reduction and forecast a relapse, which I had a few weeks later.
After 19 months I have been up on the high dose of 30mg twice.
I am due to see my rheumy in about 6 weeks. She is a young woman, but seems to know the drill. Whilst I have been in her care she has left the drops to me.
I feel lucky, after hearing some of the stories from other members, but from my point of view, I'll decide when I reduce my doses, after all, I want rid of this awful bloody illness. It's my body and my life and, boy, I want it back!
The bone scans are another issue. I protect my bones as much as possible, but after 19 months, I think I should have another one. My first was very good. I bet I don't get one when I ask. Let's see.
Jani, thanks so much for your reply. You and I both know that your drops were too fast, but at least we know!
Pats
Yes and its amazing that I now know very much more from reading everyone's comments and experience on this site than I did at the outset.
I think I will come down off the preds more slowly. The new rheumy I saw a fortnight ago who told me that the hospital were now adopting the national guidelines said that a drop of one mg every 6 weeks was now preferred. He said to jump from 12.5 to 10 then come down 1mg each 6 weeks thereafter, but I am not at all sure about the 2.5 drop.(Does anyone know where to access the national guidelines online - I've tried but can't find them). I think half mg every three weeks might be less of a shock to the system. I have just noticed that the hospital chart was printed on 13/7/00 - 12 years ago....! Didn't see it until now. There are 4 scanners in Scotland, one is only 8 miles from me and they do want me back again so maybe I'll be lucky. Hope you get one too. Jani
Jani,
put in rheumatology.oxfordjournals...
then, polymyalgia rheumatica guidelines, then opt for full text. look at (5).
Pats
Many thanks. I look forward to opening it later. Jani
I was scanned at the beginning of PMR diagnosis and given weekly Alendronic Acid at the same time. Previous bone breaks may have influenced the decision to have a baseline scan whilst I am taking Preds and possibly due to my age, 56. The results came back just within range.
I was given a bone scan, at the request of my GP when I first developed PMR . I had gone through an early menopause, like my mother before me, and because she had developed oesteoporosis, I thought my bones would be in pretty bad shape. As far as I know, my mam had never been given any help to keep her bones strong. I was now on pred. The great enemy of bone strength. I had another enemy to compound my fears - I had been lactose intolerant for at least 15 years - no milk and very little of it's bi-products. Surely my bones would be in one hell of a mess! I waited, still laid flat out on the Xray table for the results.
A yell of delight from the adjacent room ----------- Patricia, it's fine! You have the bones of a 25 year old. You're well up in the top band, which meant my bone density was very good.
I cannot describe my relief. How could this be so!
Because I had an early menopause, below 45 years, I had been given HRT. I had also eaten calcium tablets every day and continue to do so to this day. The major hormone of HRT is oestrogen. It is the sex hormone in women and whilst our overies produce it, it keeps our bones strong. When we go through the menopause we lose oestrogen and our bones weaken.
One more thing that may have added to my bone density. I have always been a very physical person. I have always been very active in the true sense of the word. My father, who believed in lots of exercise for good health had me doing "sit ups" in my pram.
Now, 19 months on, I have no idea what condition my bones are in. I will ask for a repeat scan soon. Fingers crossed.
I hope I've not bored the pants off many of you. Pats. ps. and like many of you I'm sure, apart from the state of my bones, the loss of my physical strength is, at times, unbearable. x x
Not at all Pats. Thanks for the reminder about physical activity. For bone strength it is weight-bearing exercise that counts - 'time on your feet' as my running friend used to say. Take steps. One foot after another. Over and over and over again. It's hard but we have to keep doing it.
Ooh, interesting stories from all of you, please keep them coming and keep answering the poll, if you haven't already. If we could get a hundred responses it would be great, because then we'd be able to start quoting it in articles etc. 37 in one day is pretty brilliant though, don't you think? But I have to confess to being a bit shocked by the result - almost half of us haven't had a bone scan. Scary!
i had bone scan c1 c2 on mykneck with inflammation found on c2 axle disc sent to specialist put on steriods they are helping early days yet.
i was on preds for 2 years and then taken off them within 8 days not being given any bone tablets during the 2 years i was on preds then i was given a bone scan i now have osteoporosis the only meds i get for it is adcal
Now it's more than half of us haven't had a bone scan. I'm going to mention this at the forthcoming international symposium on PMR & GCA in November.
Moderation team
