Hi Julienne,
My name is Lorraine Pray. I just joined the Internet Club yesterday.
I have been reading the messages sent
back and forth between the members for about 4 months now. I just got
the urge to respond to you because I
was given Cytoxan for my TM. It struck me suddenly on Feb 20, 1994. I
went from walking to complete paralysis
from the waist down within 6 hours. I was given high doses of
steroids IV for the first 2 days in the hospital while
every doctor in that place tried to figure out what was wrong with me.
After a 14 day stay with no improvement ,
they sent me to a rehab center.
None of the Neurologist could do anything for me. One suggested I was
in the early stages of MS. But the MRIs showed no sign of that.
I was referred to a Rheumatoligist who is a specialist in Lupus.
After a new set of MRIs and several test, he told me that I only have
one symptom of Lupus but he suggested that we try the treatment he
gives his Lupus patients. He believed that my TM was caused by an
over active immune system which produced more T-cells (antibodies) n
the blood than what was required. The cells in turn attacked my
spinal cord tissue. He cautioned me that if my spinal cord already
had lesions (scarred tissue) , the procedure would not yield a great
amount of recovery.
I made the decision to go for the treatment (a two step process)
because my respiratory system was weaking, I had trouble keeping my
self balanced and I couldn't even cough without help. In the
hospital, I was first given Plasmapheresis (therapeutic plasma
exchange) which is an IV procedure where they remove blood, separate
the red blood cells from the white and replace the white blood cells
with synthetic plasma. That took 4 days. On the 5th day, I was
given the Cytoxan ( this is considered an anti-cancer drug), one dose
that day of 1850 mgs. Prior to giving the Cytoxan, I was given Mesna
which is a drug to reduce the harmful effects of Cytoxan on the
bladder and I was given Zofran which is to help prevent the nausea
and vomiting that may occur after treatment. The whole process took 5
days in the hospital but I noticed improvement right away. I could
stay balanced when sitting unassisted in the bed. I then had 6
treatments one each month at home given by a visiting nurse. After
the second and third at home treatments of Cytoxan, my breathing and
ability to cough on my own dramatically improved. However I had no
further improvement after the 4th, 5th, or 6th treatment.
The doctor believes as do I that the scar tissue on my cord prevented
more recovery. It was a difficult procedure but I would do it again
if it would yield more recovery. As for the side effects, It caused
me sinus problems which went away after a few days, It is suppose to
cause hair loss but my hair got thicker and longer ( it did cause
hair loss for a friend of mine who also took it for TM). I was told
it can cause the ovaries to stop functioning which will prevent you
from having children and throw you into menopause. But it didn't seem
to do that with me.
My doctor believes that TM in most cases is a rare form of Lupus
(SLE). Lupus by definition is a chronic disorder of the immune system
that causes inflammation of various parts of the body. He also
believes there is an 18 month window of recovery. All that doesn't
return by than probably never will.
I hope this helps. I have been through a lot with TM. I believe I
know a little bit about almost everything associated with it.
Good Luck, .......Lorraine.