Did it make me feel sick. Yes to me and absolutely no to the lady who
was getting with me. She was bouncing off the wall and I was curled up
in a ball. Actually, my body seemed to be really fighting the treatment
like putting a stick into a hornet's nest. After the 3rd treatment, I
got them to give me vicodin to get through the 4th treatment. Basically
it put me to bed for several days after with every joint of my body
screaming at me. Was it worth it -- oh my yes.  I figure it was a sign
of what my life could be like without any of these drugs. Did it last
forever - no. Did it happen during the treatment - no.
Have I gotten it again - not yet. My new doctor had a way to test for
the level of my T cells and they are still suppressed so we continue to
cross our fingers and hope it holds. :)  So I guess I am at 10 months
and counting.
I got the same 25mg benedryl and Tylenol as I do with Remicade. The
rumor has it that if you are to have an allergic reaction, it will
happen on the first dose probably as they bump into the faster drip
times. I did not have trouble with my first three and when I did have
trouble it not only was with the last dose but over half way through the
last dose. They stopped it, called the doctor, he came down and stared
at me, shook his head and we decided together to restart at a slower
pace. But first, they injected bendryl [ouch] into the iv and shot me
with something else [guessing steroid but can't remember this long ago].
The stoppage took a couple of hours to get restarted and the slower drip
took a lot longer. So instead of 3 or 5 hours -- it took 10 that day.
I did not notice a change until nearly the 2 month after treatment. The
lady I was with was flying after the 1st dose and then running errands
for her next door neighbor after the second.
remicade is not 500mg?  used to be 430 but they don't have so many
Remicade like they did in Boston so they don't like to split the bags.
There were always min of three of us there and usually more so splitting
bags meant things were not wasted. Here they would have had to toss the
left over. I told them I would be their trash can.  It has allowed me to
go from 6 weeks to 7. Did try 8 weeks but by the 7th week I was looking
for the calendar and when the next Remicade was coming.
You can be nosy, I don't mind. :)
Ask your RD about it. Might let you continue with your Remicade.
Duckie

When the t cell count begins to rise, we will do it again.
Duckie

Rosie, have they done any MRIS? I was misdiagnosed with RA, then it
changed to poly erosive arthritis, then eventually and finally to
ankylosing spondylitis. Nothing showed on my xrays, but I insisted on
MRIs and there it was: erosions in both wrists and in my SI joints.
With AS, enthetisis (sp?), inflammation where tendon inserts into bone
is common, and the inflammation also can affect other tendons and
muscles. Just a thought-

<sigh> Anyway, prayers are on the way for the Rituxan.

Great!  I should be around.  If I get an offer I can't resist, I'll let
you
know.  :)
luv&stuff,
Denise
deMel

Thanks Rosie, that would be appreciated but I am in a mood so you might not
want to, I can't handle this darn heat.