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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-21-2013, 11:47 AM | #1 | ||
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I wanted to let those of you who take prednisone know my experience with the drug.
I have been taking prednisone since January 2010. I have to take it because my "marker" as my ex-neurologist called it is my eyes. They will lock in place and I can't move them in either direction. This causes extreme double vision and nausea. I started at 60 mg daily and over the first two years the neuro slowly reduced the dosage. Too slow in my opinion. I changed neuros and in one year he has reduced me to 10 mg every other day. At the first of this year I had my bone scan and was diagonised with osteoporosis. By July I started having extreme pain in my lower back. Finally got an appointment with an orthopaedic doctor and x-rays showed a compression fracture of my L4 vertebrae. I have had numerous falls since 2009 due to MG and SPS so I'm sure my spine is quite vulnerable. After an MRI, I have been told that my entire spine has some various size of fracture. I know many of you know the possible problems with long term usage of prednisone if not please read up on it and discuss it with your doctor. I truly regret that I've had to take it for so long and will probably have to continue to take it as a maintenance drug for my ocular muscles. I didn't read up until after I had been taking it for a while. I don't know if I'll be a candidate for kyphoplasties which should help correct the L4 vertebrae since it's been about 6 to 7 months since my first evidence of a problem. That's still to be determined. Thanks for letting me vent. Southern Bell |
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01-21-2013, 12:52 PM | #2 | ||
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Sorry to hear your troubles. I know how you feel. I have veen on varying doses up to 60 mg a day for the past 5 years. Now I have tremors mood swings hunger issues and the lovely cataracts that they gave me at 22 lol. I satill take it tho. For me, the pred is a miracle drug and next to the IVIG I get, its the only thing that works.
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01-21-2013, 01:09 PM | #3 | ||
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True, prednisone sucks.
I use it for 2 years (and 4 months) now. My highest being 25 mg, my lowest 10 mg. That doesn't seem like much, but I weigh less then 100 pounds. Until now, it caused me to have loads of problems. Yes, it helps. It may even help you survive. But it sure comes with a price! Anyway, my docs tell my my reaction is quite unusual. And I do know people who use it for over decades and are just happy to use it! For prednisone, it's something you have to try for yourself...sometimes it helps with a minimal of side effects, that's great! Althoughnplease keep in mind, osteoporosis and high blood pressure are two side effects that may occur, but you don't notice them immediatly...so I guess regular visits to the gp isn't expendable. And maybe a standard dosage of bisfosfonates to prevent the osteoporosis? Last edited by Chemar; 01-21-2013 at 04:25 PM. Reason: edited at Ravenclaw request |
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01-21-2013, 02:47 PM | #4 | |||
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If you take Prednisone or equivalent, you HAVE to take Calcium AND vitamin D3 supplements + biphosphates or equivalent.
You also HAVE to take a bone density test at the beginning of the treatment in order to have a reference status and REPEAT that test every 2 years and adapt the prescriptions according to the results. Prescribing Pred without those precautions is not professional... Maurice. |
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"Thanks for this!" says: | Panorama (02-04-2014) |
01-22-2013, 11:55 AM | #5 | ||
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After my ex-neuro placed me on prednisone, my internist immediately increased my Calcium+D to 1200 units daily, vitamin D3 to 1000 units daily and vitamin B12 to 1000 units daily (I had been taking calcium for years just not that high dosage). He also ordered my first bone density test in April 2010. He was right on top of what might happen. Unfortunately he retired in 2011 but his replacement appears to be taking good care of everything.
When my bone scan in April of 2012 showed the osteoporosis, he immediately placed me on Fosamax but I think things were already in motion with the weakening of my spine. I'm truly scared about the condition of my spine. I hope that changing my orthopaedic doctor will give me some direction. Southern Bell |
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