On to Biologics
After coming off of a Prednisone taper, for the 4th
time in a year, I called my GI Doc and let him know bleeding symptoms were
coming back and I was getting up at night often to go to the toilet. Not fun stuff. So, he let me know it was time to start a
Biologic home injection regimen at home.
He called in a RX for Humira and I was contacted by the drug
company. We talked over the phone about
taking Humira and set up delivery and an in home nurse to show me how to take
the drug. It all didn’t take very
long. The Humira drug company was great,
very easy to contact, sent me information and a welcome kit right away. The drug was delivered quickly. I was really hopeful! 😊 So
the day came, my nurse came and we got my FOUR epi pens out of my fridge! Yep FOUR!
I was a little in shock about having to do FOUR shots at once, but she
assured me that it could be what helps me feel better and I’d get all used to
it. I was scared. Kelly was sitting with us at the kitchen
table. Here we go….. She did the first
shot, then I did the next three. I did
the second injection and it stung SUPER BAD!
We did all four shots in my thighs while sitting at the table in a
chair. The epi pens are super easy to use, so glad
they are NOT needle injections. I would
so cry if it were a typical needle type injection!
An epi pen is a shot, but it’s unseen. You push the epi pen onto your skin firmly,
then push a button and the needle is released quickly and the medicine goes in
smoothly and it takes about 10 seconds… super easy.
So we did four shots and my nurse left. I felt fine, went on with my days and didn’t
see a whole lot of difference in my symptoms.
I wasn’t sure about it at all.
Then after about a week, I developed a fever, started slowly, like 99.0
and went up to 101.5 some days. This
fever knocked me to the couch and I was very fatigued and tired and sick and fevered
for 18 days! I had to cancel on some of
my activities I had planned because I was too weak to travel. My sister came over from Southern California
on her way to Arizona to see our Nephew come home from his church mission after
being gone for two years. She was to
pick me up and we were going to go together, but I was too sick and weak to
go. I felt awful about missing this
trip. My sister Selena made me feel
better, just seeing her. She hugged me
tight and wanted to take my disease from me.
My fever DID subside after she left the next day. Maybe her hug DID work! 😊
I
felt ok but I was pretty weak for a few weeks.
In that time, I took a trip to So California and met up with my sister
and my daughter in Pasadena CA and we went to a Women’s Conference for two
days. I was very thankful I could walk
and do that activity. We had it planned
for a few months back. It was like a little
miracle that I felt good enough to attend with them. I sooooo needed it!
So I didn’t take the next scheduled Humira injections,
needless to say. I called my GI Doc and
he wanted me to come in to his office. I went in to Las Vegas to see Dr. Gary Chen
and we had a discussion. He was ready to
have me go in to have infusions in the hospital, but I wanted to try a
different in home biologic first. He
called in a RX for Simponi, a different, newer biologic for in home
injections. He called in for an
injection every 28 days, one a month. I
took 2 injections to start the Simponi, along with a mega dose of Prednisone..
60 mil taper! So I took the Prednisone
steroid for almost 3 months, along with Simponi every 28 days, but I couldn’t
tell if I was feeling better (and I DID feel better!) was because of the
steroids or the biologic. Well, after
the Prednisone taper came down and I was down to 5 mil Pred a day, my last
week, bleeding came back. Dr said he
called in a RX for 2x a moth Simponi, but to this day I’m still trying to get
that RX filled. Dr. said they are
waiting on insurance to approve it. Insurance
says all they have is a RX for every 28 days.
Run around! My insurance co had a
Case Manager call me and she’s helping me with this new RX getting
approved. So thankful for that.
When I let me GI know that I was still bleeding and had
symptoms come back after my last Prednisone taper, he told me I need to go to
the ER and let them know I need IV steroids for severe Ulcerative Colitis. I was in shock about that, but I did it. They took me in, called my GI in Vegas, and
he called them back. The ER doc and Dr
Chen spoke about my condition and they decided I needed admitted for a few
days. What?! They took blood and my Hemoglobin was very
low, thus no energy.. from blood loss.
So, I spent last Tue, Wed and Thurs in the Reedsport Lower Umpqua
Hospital. It happened so fast and I felt
like I was in a dream. This wasn’t
really happening. They asked me when my
last colonoscopy was and I said it was when I was diagnosed, March of 2016 so
they scheduled me one for the next day, Wednesday.. I took the prep Tuesday
night, drank it all in one hour and was up relieving myself all night. Not fun.
Then the morning of the procedure, the electricity was out! The hospital was on generator back up and
couldn’t do procedures without real power.
Makes sense, but I didn’t want to ‘waste’ a good prep!! No One wants to do that more than once every
6 months or year! Power came on an hour
later and I was taken in first. In house
goes before scheduled procedures.
Cool.
The results were good from the colonoscopy. In March of 2016 the whole left side of my
colon was red, bleeding and inflamed.
This time, all the inflammation and bleeding is down in the very lower
part of my colon, the left side looked good and improved! Great news!!
Before this procedure, Dr. Chen was talking about surgery and possibly
taking out the left side of my colon.
Thank goodness we got pictures and that isn’t necessary at this
time. I to in for a follow up on the
biopsies they took from all over my whole colon.
While in the hospital, I had injections of steroids every 8
hours, but come to find out, it was a pretty low dosage. I think only 10 mil. I got a lot of rest, napped a lot and stayed in
bed! Daniel, Stephanie and Kelly visited
me and talked with me.. but I mostly was alone.
I needed the rest.
So up to speed for today.
