Share Facebook
Crohn's Disease Forum » Support Forum » Vent Away » I am beyond miserable


04-29-2015, 03:49 PM   #1
CLCH87
 
CLCH87's Avatar
 
Join Date: Jan 2013
Location: Orlando, Florida

My Support Groups:
I am beyond miserable

I had my sixth Entyvio infusion yesterday. I get pre meds before with benadryl and Prednisone because my throat began swelling during the first infusion. They got the first IV in and started the benadryl and I began to have extreme pain in my arm, it turned bright red and blotchy from my elbow to my wrist and was itchy. They had to remove that line immediately and start a second one. The second one went fine, got the two pre meds and Entyvio but I felt so sick during and after the infusion, I felt nauseous and had a horrible headache immediately.

So here we are, day two. I've been taking benadryl every four hours along with a pain pill and zofran for nausea. I've still got the headache and nausea from yesterday and extreme joint pain. I'm having flushing from my face down to my belly button, front and back. I just feel strange in the head, like I'm not all here. I can't even figure out how to describe it to call the Dr and ask for advice.

I'm so fed up with these treatments that make me sicker than I was before. I was so excited to get my infusion yesterday because I've been in a bad flair for the last two weeks, so this medicine is only lasting 5 weeks before I get sick again. But I've tried everything. I've had Cushings induced from Prednisone, an anaphylactic reaction to Remicade, Cimzia did nothing and Humira made my extremities swell so badly that I could wear shoes for weeks. I feel like I'm at the end of my rope and can't take any more. It's depressing. I had to take a leave of absence from work since August and don't even leave the house because my immune system is so bad that I get sick every time I do.
I've done all of this to avoid surgery but I feel like it would easier at this point.
Ok, rant over. I just needed someone to listen to me complain.
04-30-2015, 01:28 AM   #2
Jennifer
Adminstrator
 
Jennifer's Avatar
I'm sorry you're going through this. *hugs* I wouldn't try to tough it out on your own. Definitely let your doctor know about your symptoms. Write them down the best you can and then read them over the phone. This way you won't be as flustered and won't forget anything. Hope you get some relief soon.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-30-2015, 07:29 AM   #3
CLCH87
 
CLCH87's Avatar
 
Join Date: Jan 2013
Location: Orlando, Florida

My Support Groups:
I'm sorry you're going through this. *hugs* I wouldn't try to tough it out on your own. Definitely let your doctor know about your symptoms. Write them down the best you can and then read them over the phone. This way you won't be as flustered and won't forget anything. Hope you get some relief soon.
Thank you. Shortly after posting this I began breaking out into hives. Called my Dr who sent me right to the er. I was admitted and am just sitting here. Doing clear liquids, Prednisone 60 mg every six hours, and treating me aggressively for an infection. My white count was 18k. Hopefully today will be better. They're giving me pain meds for the joint pain and headache along with the stomach pains I'm having.

I'm just looking forward to feeling better.
Reply

Crohn's Disease Forum » Support Forum » Vent Away » I am beyond miserable
Thread Tools


All times are GMT -5. The time now is 04:10 AM.
Copyright 2006-2017 Crohnsforum.com