It has been one long day. The usual dose time turned
from 5-6 to 10. Had a reaction about half way in just
after they did a bump increase to 2.10 from 1.68  not
sure what that means on the pump but guessing it is the
rate the dose is metered. Anyway, began to taste
metallic and then the tongue began to swell. Thought I
might be imagining it but it didn't get better so
called over the nurse. She said when I called her name
and she turned around, I looked terrified. She reached
out and pulled the infusion meter plug loose. The
tongue stopped swelling and then the throat began to
close which quickly stopped but I lost my voice for
about 5 minutes during all of this. After the throat
stopped trying to close, the inside of my throat was
really ticklish and raw. After 15 minutes this was 85%
gone. My doctor came down to check on me, made a few
phone calls, decided to give me IV Benedryl and
hydrocortizone and then restart me at a lower dosing
rate. That IV Benedryl burns but they put it in slowly
and use a hot pack while they do it. I asked why they
though the hot pack would help -- didn't get a good
answer to that one. lol  So got my last dose in and now
I wait.
Last week, by Wednesday, I was having such a rebound
from this that I finally got drunk to deal with the
pain. My Ultram didn't touch it but that concoction of
JD, triple sec and rum worked really well. :)
I called the RD to find out if this was a normal thing
and was told that it could be. It might take 3-4 months
to work for me And would I please try and take the next
dose. So I did and now have it in me. I also have a new
pain pill in the house for this Wednesday. The molten
lava in all my joints was a bit much last week.
I guess I am just special as the lady who started with
me and taking the same dose and schedule was flying
after dose 2. Her fatigue of 10 lifted 5 days after
dose 2 and 6 days after all pain except existing pain
in her knees is gone. So after her dose three, she said
she was running errands for neighbors while I was
writhing in pain.
After dose three the ability to taste has left me all
but tart and sour. Last Wednesday, I started  getting
mouth sores but they disappeared as quickly as they
appeared. I have gained 5 pounds on this so far as
carbs are about the only thing that appeals to me. And
I have stopped eating 3 meals a day. Just not hungry.
Didn't put two and two together until yesterday.
I sure hope this is going to be worth it in the long
run. I had so wanted it to work right away for me.
Duckie who finds 50mg of benedryl a bit much
Reposted from Rheumorweb.com