Quote:
Originally Posted by huntress
Hi, you graduated from imuran? Did they put you on cellcept or something else? And wow 1999. That's a long time. Did imuran help you being on it so long it must of. I'm praying that I can continue to swallow and eat because for a year I could not eat food at all good without mestinon and even then it was hard. Plasmapheresis has been a miracle. If I had to ge more someday I would gladly get that catheter in again and get more. Despite the risk. How long does plasmapheresis last? Its my first 10. And its new to me so curious. It was vary nice meeting you. Hope you continue to bless the group.
Lisa
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Hello Lisa, and thank you! I was able to stop Imuran, cold-turkey, with absolutely no problems. No, I am not on any medications. After all these years of treatment, since 1996, I still can't believe I'm saying that, so there is always hope.
It's very difficult to know what helped, but given statistics, I'm going to suggest that it was the Imuran, the thymectomy, two magnificent doctors.....and time!
I also weaned from plasmapheresis in January, having had 4 runs, every 8
weeks, for years and years, graduating to every 10 weeks, and off! Like Maurice, I started to feel better after a few days, and better and better,
and then downhill for about a month. I had a couple of constructed fistulas so I didn't have to have lines--much easier.
If you have swallowing issues, off/on, have soft foods on hand so you can switch at any time. The key to all of this is to work with your physician and give things time to work.