Bad Chrons disease allergic reaction from Remicade

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kassidy20
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/10/2017 9:36 AM (GMT -7)   
Hey I'm new here, thought id give it a try need someone to talk to about my chron's disease. I guess ill start from the beginning to give a better understanding. I was first diagnosed with chron's when I was 14, and now I am 20 years old. In the beginning i did know how to accept having chron's, and was very depressed with all the medication i was put on. Lots of prednisone, and I gained way to much weight. Every year i was hospitalized because my flare ups would get too severe. At 18 years old, my GI doctor insisted that I try Remicade , don't know if anyone is familiar with it but it is a intervinus drug. Months went by I seemed to be fine still had bad stomach pains and occasional flare up.

My doctor took me off my pills that i was on at the time because he thought it had something to do with me not healing properly, my intestines still looked pretty bad we found out after a scope and x-rays. I kept getting extremely bad throat ulcers, so bad i could not eat/swallow for days. I lost a lot of weight and could barely walk or move bc was in too much pain/ and was too weak. This was also around the time of my senior year in high school, around prom/ and all those fun activities. I could barely walk and i was put on more steroids which made me get red bumps on my legs and ankles were swollen. cry I was constantly in and out of the hospital after i stopped taking Remicade bc we found out that was the cause. At first they thought i had mono bc i was so tired all the time, then the test came back and it wasn't mono, i had to have a spinal tap, and all types of tests to see what was the problem. They still couldn't find out what was the exact cause, they jus told me i had a lupus like reaction to the Remicade and gave me prednisone and pain medicine and that was it.

To this day I have still not fully recovered, I still have bad stomach pains, have to use the bathroom way too much, always exhausted, fatigued, and anytime i do physical labor i am extremely sore, I also get red round sores on my legs and ankles when I do too much physical activity. I don't usually like to go out bc I don't like to have to constantly run to the bathroom, and end up being very sore. Right now i can not get medication or see a doctor bc my doctor no longer takes my insurance.So now i have to find another doctor and a new GI doctor.d
Thats basically long story sorta short. Just wanted to see if anyone had any similar thing happen to them or if they can relate. Sorry if my grammar is not the best and my story is all over the place, a lot has happened in these last 4 years. Thanks for reading if anyone replies...

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3316
   Posted 9/10/2017 1:47 PM (GMT -7)   
Sorry to hear what you're going through! Yes, we're all pretty familiar with Remicade. smile I'm on a double dose every six weeks, and I've been on it for a little over 5 years. This disease sucks, and I'm so sorry you had to go through it during your HS years. I'm 31, I've had it since I was 24, which is also when I became a middle school math teacher. I had a student one year who had Crohn's, and it was rough on him. It's already an awkward enough age!

I am wondering if you need to find a new doctor. Any GI worth his salt would have run the Prometheus test as soon as you continued to have symptoms in spite of a while of Remicade to see if the Remicade had stopped being effective or if you had built up antibodies to it.

Are you able to find another GI that takes your insurance? You really, really need to be on some kind of medication. I think Humira (which is a shot you give yourself every few weeks) might be a good fit for you.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15310
   Posted 9/10/2017 2:08 PM (GMT -7)   
Hi Kassidy, sorry to read about what you have dealt with to be so young. As scifigal said it sucks to have this disease & even worse on young people. You have missed out on a lot because of it. I am much older than most of the members here (64). I do know how rotten things can be, been there & done that.

I would start tomorrow & get a new PCP & be seen. I am gathering with insurance changes you don't have one. Then the PCP can refer you to a new gi. You truly need to be on medication to help get things under control. There medications that can help you besides Remicade. I was on it for 3 1/2 yrs & did very well. In addition to the Remicade, I was also on Imuran. My infusions were every 4 weeks as we found that schedule kept things under control. Unfortunately, I ended up with Remicade induced Lupus & what a nightmare it was. I was switched to Humira & it also worked well. It may be an option for you. The throat ulcers & the skin issues are some of the lovelies connected with crohns.

Again, get a PCP lined up & get things rolling to get in with a gi. You have missed out on too much already so don't waste any time.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1775
   Posted 9/10/2017 5:38 PM (GMT -7)   
I'm so sorry that you're having such a tough time being so young. As the previous posters have mentioned. It's imperative that you get to see a new Doctor and GI. You absolutely need a new treatment plan.

There are several other biologics that you can try, and I second Humira as been the next logical choice, along with another immunosuppressant like Imuran.

Please don't wait too long, you'll really need to get this sorted out, so you can resume a normal young persons life.

you've come to the right place for advice and support. Keep us posted on how you're feeling. Really hope you get things under control soon

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 232
   Posted 9/12/2017 6:43 AM (GMT -7)   
I am so sorry for all you are going through. My son (21) has Crohn's and it too has interrupted his life on many levels. But after a very bad year (two hospitalizations / illeocecal surgery / missing weeks of college classes / losing 40 pounds) he has found the right GI doctor, the right medications and is in a deep remission. The journey can be long but there can be positives along the way. I know my son will have more happen to him in the future but I never thought he would ever feel this good again. Best to you and good luck finding a competent GI doctor. Don't give up!
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