<< Even though I never recovered to the
point at which I could walk, I feel the Plasmapheresis therapy and
Cytoxan completely stopped the progression of TM in my body. Cytoxan
does have some side effects but I believe the treatment is well worth
the risk of its side effects.
Hope this helps, Lorraine............................
>>
Lorraine,
I had TM in 1990 and then was dx'd with chronic guillain barre syndrome
(quite similar in presentation to tm, but of the peripheral nerve system
rather than the central nervous system) this past January.
Plasmapheresis:
The treatment for GBS is plasmapheresis or immune globulin treatment. I
opted for plasma treatments and have had it ever since (presently weekly, in
the beginning, course of 7 days).
Cytoxan/Fludara:
Additionally, they recommended Cytoxan or Fludara for me, both chemotherapy
drugs. I had 6 months of Fludara and improved markedly.
There were side effects with Fludara, such as extreme fatigue once the drug
is discontinued, inability to sleep while on it, bad naseau, irritability.
No hair loss for me and I understand that it true with this drug (check with
your doctor on all of the side effects with both of these drugs, though).
The Fludara was administered at my doctor's office (an oncologist is used for
this purpose) in rounds of five days every 28 days or so. Each session is
about 20 minutes (tack on another 20 if you need IV anti-nausea medicine as I
did). The week after or so I had to go back for a finger stick to check
blood levels to ensure the white cell count did not drop precipitously low.
Hope this helps. Please feel free to ask if you have any other questions.