Quote:
Originally Posted by T8T3
Ok thank you, I will look into that. I was supposed to start predisone last week and then taper 5 mg every week. But i havnt been able to take any pills yet because i worry about side effects.
Sorry to hear that you still have problem from predisone. For how long was you on predisone and how long did it take to wean off?
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I was first put on Prednisone in April 2015 when I was admitted in ICU when I had a severe crisis! I couldn't breathe, talk, swallow, hold my head up and barely move my arms...
They gave me a bunch of IVIG for 3 consecutive days and slowly gave me Predisone, they started with 5mg/day and kept upping every 4th day and reached 60mg daily by late May and kept on till October 2015 and then started to tapper off in January 2016 and took till June to fully wean off, it was a bumpy road to get off I had to up dosage 3 times during the time I started weaning off because of side effects.
I'm now on 200mg of Imuran taken daily, we tried to lower the dose but my symptoms worsened...I did 84 PlasmaPheresies till the month of October 2016, my Neurologist got me off because of complications and now on IVIg every 3rd week...
IVIg for my symptoms isn't as effective as PlasmaPheresies but overall I'm feeling better, we were finally able to up my hemoglobins back up and I seem to have more strength but the trade off is I have a lot of fascial numbness and have a hard time speaking at times but my swallowing and vision are very good so I'm learning to live with.