Quote:
Originally Posted by Snoel
When I was admitted for my crisis in April 2015 I was in real bad shape, couldn't breath, speak nor swallow, arms neck double vision.
They stared me on IVIG for 4 days and after a week started me on Prednisone 20mg and every 3 days kept upping dose by 10mg all the way up to 60mg. I was on 60mg for a month to see how I'd react, unfortunately it still wasn't enough we then started upping Mestinon which I took every 4hrs, dosage started at 60mg and again seeing how I'd react.... Long story short I went as High as 180mg every 4hrs and it still had serious symthoms...they kept telling me that Preds could take up to 4 to 6 weeks to kick in.
I finally started seeing some improvement after 3 weeks but was still on a high dose of Mestinon after 6 weeks with very little improvement they decided to start me on Imuran again starting a low dose 50mg upping every week by 50mg to finally Max out at 200mg a day and still on to this day, imuran can take up to a year to kick in it took me 8 and we then started to wean off Preds ever so slow, I was cutting back 10% of dose every 2 weeks, once you get to 10mg it gets even more crucial to wean off in VERY SMALL increments or else you can have some pretty adverse side effects !!!
All this said there's no 2 cases alike... What works for some doesn't mean that it will for you...
I still have issues and symptoms that keep popping up, I've done 82 Plasmapheris which I was doing on a weekly base and it's had it's toll on my body which I have gotten off since 2 weeks and now back on IVIG every 3rd week.
I'm getting tested for LEMS and LUPUS since I'm having somewhat similar symptoms, I hope to GOD I don't have!!!
All I'm trying to say is...PATIENCE, PATIENCE, PATIENCE and then some! don't give up and learn to accept and live with your conditions and make adjustments accordingly.
I'm back to work after being in the hospital for 8weeks and off work for 10 months, I use to work 60hrs a week and now work 24 to 30hrs and made some BIG changes in my lifestyle... I thank God every day to be able to be with my Family and loved ones!
Good luck and don't give up!
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Wow Snoel,
You really had a rough run there. I had a similar experience as you, with crisis in Jan this year. Finally had to have heavy dose of predisone, 60 mg mestinon every 2 hrs, and 100 mg Imuran daily.
Now down to 10 mg predisone. Probably will stay on Imuran. My main difference is that, at least so far, not much problem. Oh yes I had to do 5 treatments of plasmapheris. It really helped me though.
I had a minor crisis last year with plasmaphrisis, also helped a lot. Seems like every time I have plasmaphersis I have some A-Fib. Probably not related. The cardiologist did not seem too concerned.
FREDH