Back on the 28th
of February, my Hutch oncologist put me on duloxetine, Cymbalta, for the
neuropathy in my feet. Dr. Powers put me on gabapentin (Neurotin) for the
terrible hot flashes that the chemo caused.
He said that would also help with the neuropathy. To tell the truth, I don’t know if either one
helped with the neuropathy, but it could be that they helped to prevent it from
getting worse. I’ll never really know
about that.
Last week Mark needed to
be out of town all week for his job and needed someone there with the boys and
the dogs, so we went up on Monday rather than just the night before my surgery.
On our way there, I got to thinking that I would like to get off of the above
two drugs. I had been off chemo for
eight weeks, and my feet had made some improvement, so I didn’t think I
particularly needed them. Plus, I hated the side effects of both – wanting to
sleep all the time, blurred vision, loss of balance, dry mouth, dizziness. So, I called the oncologist’s office to see if
I could discontinue them and how I should go about it. I didn’t think you should just stop
them. Well, I didn’t do my homework,
which I should have done. First of all,
I should have waited until the whole surgery thing was over. Secondly, I should have done a WHOLE lot more
reading about duloxetine before contacting the dr. But I was concerned about the upcoming surgery
and wasn’t reading as I should. When the
nurse called me back, she said the doctor said I could stop duloxetine now, and
I could cut the dosage of gabapentin in half that week and stop it completely
the next week. So, I did just that. The last 60 mg of duloxetine was taken last
Monday, Aug. 7th. The surgery
went great, and we came home on Friday.
I felt great that whole time.
Saturday morning, we went
to Hutch, and I went into Walmart to get a few things while Guy went to a
couple other places to get a few things.
I was taking my time, and suddenly I felt very dizzy and like I was
going to faint. I paid for my things and
sat down at the front of the store to wait on Guy who was off running his
errands. I texted him I was ready and
feeling weak. The more time passed, the
worst I felt – all over. I went home,
and wondered what in the world was happening to me. I began to look at the only thing that had
really changed – I had stopped duloxetine.
Everything I saw said NEVER stop this drug cold turkey. I was experiencing all the withdrawal symptoms
(EXCEPT thoughts of suicide)
1.
DIZZINESS – I’ve been dizzy before, but this
was not like any dizziness I had experienced.
It is like something spinning crazily inside my head.
2.
Diarrhea –
sometimes every 15 minutes
3.
Tremors of my
fingers
4.
Loss of appetite
5.
Nausea – not to
the point of vomiting, but just puky-feeling every now and then.
6.
Shortness of breath
– like I just can’t breathe deeply enough.
7.
Weird sounds in
my ears – like the sound of “FOOT!!”
8.
Nightmares – not really
bad ones, but just very VIVID dreams.
This was unusual because I had not been dreaming for months. And usually when you dream, you remember your
dream and think nothing more about it the rest of the day. But these vivid dreams keep coming to me
during the day, as though I’m trying to remember all about them.
9.
Increased BP –
from 162/103 Sunday morning to 144/95 this morning. My BP has been really good prior these last
few days.
Then cutting back on the gabapentin
caused hot flashes and itching everywhere.
But the latter two symptoms were NOTHING compared to the WD of the duloxetine.
I kept reading about the “bead
method” for tapering off of duloxetine.
And then I found a very helpful FB site run by doctors to help people
get off of this HORRIBLE drug. I began
to realize what a MAJOR problem thousands of people are having getting off this
drug!! Most people began taking this for
depression – I just wanted some relief from my neuropathy. I had NO IDEA what I
was getting into.
Y’all know that I am NOT
CRAZY and never have been. I have never
suffered from any depression and don’t now.
But let me tell you, these WD symptoms are VERY real physical
symptoms!! And they have totally messed
up what was a very nice recovery from chemo and surgeries these last 8 weeks
Since I had only been off
the duloxetine for a week, one the administers of this FB site suggested that I
go back on it just to get rid of these horrible side effects, and then under
the supervision of a doctor, begin the tapering off using the bead method. The bead method is very exact – you open 3
capsules – one at a time. You count the
number of tiny white beads in each capsule and take the average of the number
of the beads in each capsule. Then you
take 10% of that number and remove that number of beads from the capsule. Put the remaining back in the capsule and
take that capsule. Take this number of
beads for 2 weeks and then reduce the beads by another 10%. You might have to reduce by 5% or even less
if you experience symptoms again. This
will most likely take up to a year or more, depending on how much your dosage
is or how long you have been on the med.
Knowing how tiny these beads are and how precisely and consistently you
need to be, you can see how going off this med cold turkey is a HUGE
NO-NO! I had NO idea!!!!
So, this morning, before
trying to go back on the duloxetine, I called my primary care doctor, and I’ll
see him in the morning at 8:45. (KC wanted me to see him when I got home just
to do a post op check anyway.) I found
out my Hutch oncologist is back from her maternity leave, so I’m going to see
her at 9:45. She put me on this, so she
better know how to get me off of it!! And she needs to be caught up on my last two
surgeries anyway.
I’m just so frustrated
over all this because I was doing so well. I didn’t really need this bump in the road! And I’m really aggravated with myself
for not doing my homework before stopping this medication. I should have caught this and questioned my
doctor when he said to just stop it. A
case for 2nd opinions!! I’m
anxious to see what the doctors are going to say tomorrow.
For those who do not
follow me on FB, at the end of the last blog, I was getting ready to see the
plastic surgeon to see if he, too, would recommend removing the remaining spot
after completing chemo and radiation.
He, too, concurred that it should come off, and he wanted to remove it
the next morning! OH! OK, well, while we are here, we might as well
go on and get rid of it. He scheduled me
for 1st thing the next morning.
He took out a section about the size of a silver dollar. He placed an artificial “skin” over it and sent
me home, waiting for the pathology report to return before closing the
wound. A few days later, I called and
the report on the margins was “inconclusive” because of the large amount of
inflammation caused by the radiation.
The recommendation was to remove another 1 mm of tissue all around
before closing the defect with a graft from my leg. A large dressing remained in place until the
next surgery which was scheduled for about 2 weeks.
I guess
it was because of the pressure from this dressing, but that was one of the most
painful two weeks of all of my surgeries.
So, it was on Aug. 10th that Dr. Przylecki did the reconstructive
work from this latest removal. I couldn’t
have asked for better results. He was
able to take some tissue near my neck to fashion a little flap that he rotated
up and stitched down over the wound. You
can see by the picture what a neat job he did.
Not everyone has the letter of their last name “branded” on the back of
their head!! :) AND he didn’t have to use a graft!!! No donor site on my leg!! WOOHOO!! I go back to KC to get my stitches
out on Aug. 30. Then I go back the 3rd
week of September for all my regular scans.
Hopefully, between now and then NOTHING shows up!
And hopefully, I’m up to
attending the Kansas State Fair, which is not far off!! Most of you know how I LOVE the KSF!!!
So, for now my main prayer
request is regarding these AWFUL, incapacitating withdrawal symptoms!!! If I can just get rid of them – even if it
means following this tedious bead method of tapering, I will be SOOOOO
grateful!!!! Thank you soooo much in
advance!!!
And as always…….I’m in His
hands……