Your friend with the problems - what were they? Do you think 150 mgs to start is high? You've dealt with this for a long time and I know you have the knowledge..........
Yep, Dr, I told me it would take a long time - not good news considering he bumped me back up to 60 mgs a day of pred - just got over my sideburns and fat face.......was starting to look human again!
I wasn;t having any bad reactions - in fact I was down to 15 mgs a day of pred, then I just kept getting sick and staying sick and my energy really tanked, but isn;t that part of MG - the energy thing?
Just had 5 days of phoresis - it sucked, but it did make me feel better.....now I just have to deal with it and not over do it again, otherwise my butt will be back @ the hosp again! There will soon be a Mike and ERin Hermes wing @ the Methodist - lol!
There was a lot of scar tissue in my jug from the last exchange and one of the nurses told me it was due to our disease and our high platelets - have you heard that?
I need to see an internist and ask him what to do about it.
Apparently my blood pressure is way low too, so I have to see a few other drs - the fun just never ends!!!!
How are you doing? Are you still feeling better?
Erin
Quote:
Originally Posted by MissyGirl
I have a friend who has been on it for a long LONG time and she loves it. I know one woman who had such a bad liver reaction to it that she became seriously ill and had to be hospitalized. I know others who are in between those reactions. As for its effectiveness with reducing MG symptoms...that varies as well.
Did your neuro tell you that it takes 9-12 months to even START to see good things with it (the bad stuff will show earlier)? Why did your neuro think the CC wasn't working? You haven't been on it very long (it can take 6-9 mos at 2-3000 mg a day dosage to start to see results) and you weren't having problems on it, were you?
Good luck!
Missy
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