Thank you Mark. I was never checked (to my knowledge) for serum TPMT and yes, I’m not apt to use Cellcept again. This is really a bummer, 🙁 as I was hopeful my body would tolerate it and extend the time between PEs, but no such luck. I too get tingling as symptoms worsen. And frequently the tingling returns a couple of day after a treatment and then goes away.

I felt horrible Thursday: tingling, numbness, burning, a tic in my cheek, eyes burning, itching on my neck, back, arms and legs, lips burning and flushed, that “flint and steel” smell was very prominent, ringing in my ears and my vision had a bright seashell looking spot in the upper left of both eyes. I had a low grade headache and slight joint pain in my right hip, fingers and right knee. I did feel better though Friday morning which helped confirm that it was a reaction to Cellcept.

I tried an experiment Friday. I took 500mg cellcept in the mid morning and within 30 minutes the my lips started burning and feeling flushed, the tingling returned to my fingers, toes, arms, legs, and the tic returned to my cheek.

I took another 500mg in the afternoon and within an hour started feeling quite lousy again.

I didn’t take any more Cellcept Friday, Saturday or Sunday. Saturday afternoon I started feeling better again. I still have some itching on the arms legs and back, the numbness has diminished except for my toes. My lips are slightly burning, but feel almost normal again. Sunday I was fatigues so I went to the gym and went through a full workout.

So I’m starting to get back to “normal”. I am going to relay all of this to my neuro.

Gary

I’m on full dosage (2000mg/day not 1000 as I 1st reported) of Cellcept as of today. My immune system seems to be really active, I wonder if it’s responding to the Cellcept??? The sensory numbness in my fingers through my fore arms up to my shoulders is very noticeable today. I had two PE’s last week (one on Wednesday and one on Friday). It is the first time I went 6 weeks with only on PE for the 1st time since my initial 5 PEs. (It was a little too long though as my right leg was giving me a lot of trouble.

I’m leaving to go to the gym now to do my weight training and 30 minutes of aerobics on the elliptical machine. Exercise seems to be very helpful to my neural network as I usually always feel better neurologically after wards.

Gary

Well, after months of reprieve (and me thinking it’s gone for good), “the smell” is back. 😡 It started again faintly yesterday but noticible and today it’s prevalent.

It’s smells like flint.

(And, oh yeah, it’s even there after I take a bath). 😀

Hullo Everyone, I’ve missed you.

I had a bad reaction to Azathioprine and had to stop taking it. Fatigue and sour stomach set in (flu like symptoms) and I took my self off. The neurologist suggested starting again slowly at my next visit. I took one tablet and was violently ill within two hours and it lasted for 12 hours.

I start cellcept as soon as the meds arrive.

I am now up to 5 weeks between plasma exchange treatments. I have regained most of my muscle control and feeling. My toes still have numbness and the bottoms of my feet still have the “bunched up socks” feeling. I’ve regained a lot of reflex response in my arms, legs and feet.

My neurologist said he was amazed at the strength I’ve regained and my neural repair. He said he can’t explain it and said based on my initial electrical nerve conduction tests my prognosis was not good. He is very pleased and said I was his “poster child” for “hard work” results. (I credit God!)

Praise God too, I have a job. It really was a God send. I’ll have to share it with you sometime.

I have a friend who’s granddaughter was diagnosed with GBS recently. Her docs said they couldn’t find anything wrong with her and attributed it to being “all in her head”. 😡 He knew my condition and knew that her symptoms were similar and asked me to speak with her mother.

To make a long story short, I urged her to talk with her docs about GBS and insist on starting IVIG. They did and she responded quickly and was diagnosed with GBS. She’s now recovering. I urged her mom to vist my friends at the forum.

God bless you all. Here’s hoping Cellcept is tolerated by my body and the Plasma Exchanges are stretched out further.

In Christ,

Gary