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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)

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@dustymi11er

Evening all,
back in the ward after a bit of a stumble with my medication. I Was diagnosed with this belter earlier June after a week in hospital getting steroids for 3 days drip and then 60mg oral a day. my symptoms have been double vision, walking and gaite bad, a horrible wet feeling on the left of my face, trouble eating or drinking and swallowing, and hiccups. I was allowed home after a week and recently have started to cut down on my preds but haven’t coped to well. Went from 60mg to 40mg with a new immune suppressant myfenax to start at 500mg. Bloods every 2 weeks and down another 10mg on the pred if all is well every 2 weeks and up on the myfenax until stable on 1000mg and 20mg pred. Got to 30mg pred and 750mg myfenex when symptoms started returning. Walking with a stick ok still, swallowing is worse and dizziness returned quite bad but not double vision. Sorry for the long story, I’ve nothing to do on the ward and I ain’t paying £10 a day for rubbish tv 😳. Question b4 I see the consultant, do you think I’ve came off the pred to quickly, seems most come off 5mg or 2.5mg at a time. 20mg in 1 leap seems abit steep. Thoughts and questions most welcome. Have a good night

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Replies to "Evening all, back in the ward after a bit of a stumble with my medication. I..."

@dustymi11er oh, I’m so sorry that you’re in the hospital. This AD can be a real puzzle to work with—I still feel that way. One day you’re fine, or think you are, and the next day, you’re back to square one. And then, you’re supposed to taper the prednisone! Aaagghhh. A prednisone taper needs to be slow and steady. Your body needs time to adjust to each reduction in dose. I learned that the hard way, like you. I’m now reducing by 1 mg a week. It’s much easier.
Yes, talk to your consultant. They aren’t the ones taking the steroids, you are! Be your own advocate!
Be sure to let me know how things go.