Out of Remission
AnonymousJuly 25, 2007 at 11:55 pm
It has been awhile since I posted – after my official dx last Sept, learning to walk again, completing my divorce and getting a great new job I thought I had CIDP beat. Docs were treating me with 20mg pred, monthly IVIG, Imuran and Neurotin – but then symptoms started to progress. It all came to a head 2 weeks ago when I went in for IVIG and couldn’t breathe or walk. 4 days on a ventilator, 6 days of pp and the decision to just pump me full of solumedrol seemed to do the trick. I’m home, exhausted, scared and don’t know what to do.
My doc in San Antonio is working with a dr at Cornell who has done some great research. They have me on 2000mg of Solumedrol 1xweek, with all other drugs discontinued. I’ve thought about the rituxin route but feel safer with the steroids, I’ve been on them continually now since Sept 2006 with few side effects. Am I pressing my luck? Will there ever be a time when I don’t need to worry about a relapse? The good thing is my employer is amazing (unlike my prior job that fired me) and everyone is reallly supportive. When is it OK to go back into the world and not be scared? Has anyone had luck with solumedrol treatments only? Does your body ever recover from the ventilator?
Thanks for being a place I can vent!
29, San Antonio TX
AnonymousJuly 26, 2007 at 1:00 am
You sound like you have been through the ringer, my goodness and you are
so young! I can’t answer your medical questions but I can relate to your
being scared to go back out in the world. CIDP always has relapses, but if
the correct type of medicine helps you maintain and curtail the progression
to a lesser state, then, the world is waiting for you. Maybe all that you have
been through has created the correct medicines you need now.
Never be afraid because what works for you will be what you stay on…it takes sometimes, these sudden onsets, to try something new that will help
you down the road in the long run.
Stay positive and rest as much as you can. It’s a good feeling to know that
your work has compassion for your disease…some don’t.
I have had this disease for over 10 years now and it’s something that you
learn to live with. Each person who has it finds different meds that work
for them, yet each person has a slight variation.
Good luck to you and I hope that the meds you are on now, will be your
answer in maintaining your ability to function.
AnonymousJuly 28, 2007 at 12:30 pm
After being off the vent for 2 weeks I still have a raspy voice and sore throat. My voice also gets really tires, and if I start to get emotional (either laughing or cyring) I get into coughing fits and start to gasp for air.
I also was really tired for the last week (more so than normal CIDP) I thiunk my body was trying to get trid of all the drugs that had me sedated for so long.
AnonymousJuly 28, 2007 at 11:54 pm
Give Your throat a rest. You will find that with rest the nerves will have a better chance of repairing themselves, then if you don’t let them rest. Breathe through your nose, short breathes in through your nose and out through pursed lips. like an asthmatic should breathe, it helps. sip lemon water throughout the day. Your throat will heal slowly. Take care.
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