 Posted 08/04/2011 08:41:31
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| Thanks Linz. Wow, your spine was -12.5 ? OMG, that sounds horrendous. Did you get it back to -3.3 with OP drugs? My IBD has been a nightmare this past decade. But, I am finally in remission thanks to a drug trial I am enrolled in. Take care
Osteoporosis from long-term steroid use (M/34)
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Posted 08/04/2011 20:42:58
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Hello Barnsbury
I had my first Aclasta infusion 8 month ago (after 2 years on Alendronic acid).
In the first 3-4 days after the infusion I had some thing like flu, muscle pain and headace.
I was very tired the first 8-10 days after the infusion.
After that, I was OK.
/Kurt
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Posted 09/04/2011 11:40:23
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| Hi Kurt Thanks for sharing your experience. So, it seems muscle pain is a very common side effect from this drug. How much calcium are you taking?
Osteoporosis from long-term steroid use (M/34)
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Posted 10/04/2011 19:22:36
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Hi Barnsbury
I am taking 1000 mg calcium on citrate base - plus what I get from food.
(I dont drink milk).
D3 = 85 mcg (3400 IE).
/Kurt
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Posted 10/04/2011 23:37:41
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Hi Barnsbury! I thnk it was a question of them doing a Dexa scan just at the right (or wrong) time, when I had my first bad bout of colitis - nothing stayed around long enough to give me any nutrion. It was the mesalazine that did the trick.. It came back up to -2.7, but has worsened again since the menopause is finally over (phew!) hence more medication to come now, but not sure what until the bloods come back.
diagnosed OP at 40, menopause at 42. Intolerant of AA and SR. Got along on Adcal D3, diet and exercise for last ten years. OP worsening. Fractured knee, fibula and shoulder this year. About to commence annual infusion.......
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Posted 13/04/2011 14:08:23
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Bisphosphonates
This what I have been treated with for over the past years.The last treatment was a year ago and the day after the intravenous drip I had really bad flu like symptoms that put me off my feet for a week, most of it spent in bed. I have also noticed since this treatment the pain in my back and legs is always with me.
I have tried different pain killers, most make me feel sick and all I have to rely on is paracetamol.
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Posted 03/05/2011 01:20:28
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Hi Barnsbury,
Sorry to hear you've been through the mill, I have had a similar experience to you I guess. I'm 38 and have steroid induced OP from 5+ years high dose pred, poor absorption (still weigh just 6 stones 3lbs) & lack of oestrogen. I think my spinal t score is similar to yours however my Consultant at the Hammersmith explained that steroid induced OP doesn't show on a Dexa scan as it affects the bone differently from 'normal' OP. Therefore having a t score in the osteopenic range doesn't mean much & doesn't really provide a true reflection as regards your risk of fracture. The reason I had a scan was due to months is chronic back pain, after which I was finally sent for x-ray. 5 vertebral crush fractures were found & this was confirmed on the MRI. Last month I had the Zolendronate (Aclasta) infusion & apart from feeling fluey for a day or two I had no real side effects. I have no idea if it will work or not, however i'm so terrified of sustaining further fractures, I'm willing to try any drugs! The Consultant said it was my decision when I expressed my misgivings about the drug, but advised that I had an extremely high risk of further fractures if I didn't have it. As it is, I'm still waiting to see an orthopaedic surgeon as my back is still painful (though much less), I have a noticeable hump developing (much to my horror & distress), worsening scoliosis and permanent numbness/pain in my hips which my physio says is coming from L2.
I'd be interested to know how you get on with your OP & IBD treatment.
Take care, Kat x
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Posted 09/05/2011 12:32:10
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| Hi Kat Thank you for your very useful post. Sorry to hear of your back troubles. I didn't know that OP could cause back pain! It just gets worse. All my side effects from the Aclasta infusion have gone. I have an outpatient appt at Royal London Hospital in July. Its just a routine follow-up. I guess I wont know if the Aclasta is working for a long while yet. I will of course write back with any news. Take care
Osteoporosis from long-term steroid use (M/34)
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Posted 19/08/2011 22:11:13
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I have got my second Aclasta infusion 3 days ago.
This time, no side effects.
/Kurt
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Posted 20/08/2011 11:50:05
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Hi Kurt Thats good to hear. Maybe only the first one gives the side effects!
Osteoporosis from long-term steroid use (M/34)
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