Plasmaphersesis is used sometimes to treat autoimmune activities such as TM and
some peripheral nerve demyelinating disorders. Unfortunately, like most of these
treatments, it doesn't work for everybody. It is invasive (involves blood
exchange-sort of like dialysis) and therefore increased risk; is expensive; and
not available everywhere. It is NOT first line treatment for TM-as we all know,
steroids are first line. Heaven knows we've seen enough stories of people who
are treated by uneducated docs who are not even aware of steroid use (easier and
faster to do than pheresis.) It's not the accepted mode of treatment for either
our cousin MS or TM. Those of you searching, try combining MS and plasmapheresis
in your search-I think you'll find mixed reviews, studies with small numbers and
such. Apparently (in lupus patients) there has also been seen some increase
(rebound) auto-immune activity after the pheresis.
While I was getting cytoxan at our center, I was told of an individual
w/progressive MS who had the combo of cytoxan and plasmapheresis and did very
well, with excellent return of function. (The oncologist kept forgetting that I
didn't have MS;or maybe he assumed I someday would). My neurologist told my
pheresis was sort of last-ditch, nothing else is working treatment. We did the
cytoxan (which worked) and IVIG (which worked better) and never got to that
step-Thank God!
Our new correspondant apparently did well-good for him!-but unfortunately he
seems to be trying to generalize it to us all. Sad to say, it is no miracle
cure---BUT hey, ask your doc, couldn't hurt.
This came from a site re: treatment for lupus (where it does seem to be
promising):
6.4.1 Plasmapheresis
Initially, therapeutic plasmapheresis appeared to offer a
promising adjunct to
conventional therapy since it allows the direct elimination of
autoantibodies and
immune complexes from the patient’s circulation.[82] A number of
controlled
studies, however, have since demonstrated no additional benefit
when
plasmapheresis is combined with conventional immunosuppressive
regimens.[83,84]
Advancing beyond the strategy of merely adding plasmapheresis to
other treatment
modalities, we and others have tried to "synchronize"
plasmapheresis and
immuno-suppressive therapy.[85-87] In order to exploit a presumed
plasmapheresis-induced compensatory increase in antibody
production ("antibody
rebound") and thus in the vulnerability of pathogenic lymphocyte
clones, high dose
intravenous cyclophosphamide was applied shortly after three
large volume
plasmaphereses. The results of this approach, which also includes
6-month
maintenance therapy with oral cyclophosphamide, continue to be
promising.[87]
Twenty patients treated according to this protocol experienced
rapid remission from
severe disease, which in some cases had proven refractory to
pulse
cyclophosphamide alone. More important, 13 of these patients have
remained in
treatment-free clinical remission for a mean of 5.2 years, some
for more than 10
years. This suggests that long-term remission or even cure are in
principle possible.
However, whether and to what extent the inclusion of
plasmapheresis in this protocol
has contributed to the favorable results remains to be
determined.
Happy Easter, everyone!
Sam, in Boston where the crocuses are coming up!
JHarper33(AT)aol.com wrote:
> I have never heard from this guy before; I'm not sure how he got my e-mail
> address, except that the archives are available to anyone searching the web.
> I don't know what to make of what he says, but thought I'd forward it to the
> list for your consideration.
> Barbara
>
> ------------------------------------------------------------------------
>
> Subject: Transverse mylitis ( there is a cure since 1982)
> Date: Fri, 2 Apr 1999 17:40:28 EST
> From: Mavric151(AT)aol.com
> To: JHarper33(AT)aol.com
>
> To whom it may concern
>
> I do not understand why your disease spread over such a long period of
> time.
> I contracted this disease in the military (which was caused from a flu shot)
> I was geniepigged at Walter Reed Medical Center and had 99% recovery in 15
> days.
> They told me they now had a cure for the disease and I was the first. From
> my experiments made on me they found the cure to Gillian Brea Sydrome. Of
> course
> I was alittle hacked that they didn't release this information for 3 years
> to the civilian
> population for 3 years after the fact. I heard about it on the news in 1985.
> Did not your doctors do plasma phoresis on you people when first diagnosed
> with TM? somebody screw up here. It pains me to see persons like yourself
> still aflicted
> with this. I am still in contact with the head of the neurology department
> for Madigan
> Army Medical Center which was working on my case in D.C then and transferred
> here to Ft. Lewis. I will try to get some answers for you if you have any
> questions you like to share. Also my other doctor that worked on my case is
> suppose to be practicing in seattle, I will call him if necessary. If you
> want me to just butt out I do understand that too. Feel free to call me
> about this anytime (253) 875-2134 my name is Ben and I live in Graham
> Washington. I will try to help in anyway I can.