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Old 12-17-2013, 09:21 AM #1
Southern Bell Southern Bell is offline
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Default High dosage of prednisone and osteoporosis

Has anyone experienced an osteoporosis diagnosis after being prescribed prednisone for symptoms of MG? I started taking prednisone in Jan 2010 at 60 mg per day. The dosage was to be decreased slowly to where now I take 5 mg every other day.

Last year I was diagnosed with osteoporosis after I experienced a compression fracture of my L4 vertebrae. Years of falling had weakened my spine and I already had several issues with my back before MG appeared on my doorstep.

Now my spine doctor says he can't fix my back because my bones are "like butter" so he recommended that I take a drug called Forteo (administered by a doctor who is an osteoporosis specialist ) which is suppose to increase the bones density. The FDA has only approved this drug to be taken for two years and there is no guarantee that it will help.

Just wondered if anyone has experienced this diagnosis. Thanks.

Southern Bell
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Old 12-17-2013, 09:49 AM #2
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I was told I had a 10% decrease in bone density from the baseline bone density scan I had the summer I started prednisone for my mg and the one I had this summer (2 years apart). I was on a high of 30 mg of prednisone per day and was down to 15 per day at the time of the 2nd scan.

They've started me on fosamax. Wondering if there is some way other than a bone density scan that I can only get every two years to determine whether these meds will help.

Sorry you're having such difficulties, as if MG isn't enough!
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Old 12-17-2013, 05:51 PM #3
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Hi Southern Bell and Schavarria
Anyone taking high dosage of Prednisone for more than a couple of months should take the adequate steps to avoid osteoporosis: take D3 vitamin (1000 UI per day)and calcium (1000 mg/day) supplements, also some kinds of bi-phosphonates (fosamax, actonel...).
(Pred also requires potassium supplements)
As a standart practice, a bone density scan should also be run at the beginning for reference and normally repeated every two years.
Recent drugs like Forteo are now used when some bone fragility is already present.
A member of this site, Erinhermes, whom we have´t heard of for quite a while, had similar, or even more acute bone problems, could give you more details.
Maurice.
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Old 12-17-2013, 06:09 PM #4
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I just had a Reclast infusion today for severe Osteoporosis. I was diagnosed with MG in May and started on low dose prednisone (20mg a day). I had been diagnosed with osteopenia in 2010. I decided not to do Actonel or Fosamax at that time and just take Calcium, Vit D and Strontium on my own. My next dexa scan after starting pred showed improvement in my spine but severe deterioration in my hips. I was sent to a rheumatologist who did tons of testing to determine the cause. Nothing abnormal was found and it was determined to be steroid induced.
I am on Cellcept and weaning off pred now. My neuro seems to think I can stay on pred as long as I'm getting treatment for the osteo. I don't think so and will not go back on pred unless it is an emergency. My MG symptoms are being controlled well so far on Cellcept and mestinon.
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Old 12-18-2013, 09:18 AM #5
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I agree get on vitamin d3 i take 6000 iu a day, just had a scan and they said the bones look good, i have been on the pred since early march started at 60mg a day, down now to 15mg every other day the doc told me up front if i was not on vitamin d3 to get on it..
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Old 12-18-2013, 10:45 AM #6
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I forgot to mention I've been on a Vitamin D/Calcium supplement since I started prednisone. Thanks for the advice!
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Old 12-18-2013, 11:09 AM #7
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Thanks to all for your thoughts and experiences.

I have had three bone scans. The first was before I started taking Prednisone and it showed no problems. The second was two years later and it showed a degeneration of bone mass. Those two were scans of my hips only but the third was a full body scan performed by the oesteoporosis doctor. It showed another degeneration of my spine and my wrist.

I am currently taking 100,000 units of vitamin D3 every other week, 1,200 units of calcium 600+D once a day, and 1,000 units of vitamin B12 once a day that all have been prescribed by my neurologist.

I was prescribed Fosamax by my internist who originally diagnosised the osteoporosis. But the Forteo was recommended by my spine specialist when the fracture happened.

I don't know if the Forteo is helping. Every time I have been to the osteoporosis doctor he asked if I can tell any difference but all I feel is intense pain from the fracture. He really can't tell me what I'm suppose to feel because of that problem.

I truly am at my wits end dealing with all the issues of MG, SPS and now a fractured spine. All these illnesses have taken a toll on my body and spirit. I guess I'm just looking for others' experiences.

Southern Bell

Last edited by Southern Bell; 12-18-2013 at 01:33 PM.
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