Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

1,717 Members
4,844 Posts
0 Online
Skin & Hair
/ Hidradenitis Suppurativa Support Group

remicade allergic reaction

deleted_user
deleted_user
I was getting my 2nd remicade infusion yesterday and I had an "allergic reaction." I was about 10 minutes from finishing the infusion when I felt very "not right." My chest felt heavy with a strange rush like a non-stop adrenaline rush, my neck and jaw got very tight, and I felt like I was going to faint. It turned out that my pulse rate was 145 and my blood pressure went up to 192/110. My O2 levels were normal. They gave me benadryl and cortizone in my IV and took me to the ER, which thank goodness was down the hall from the infusion room. It was a very scary experience. I have to call the doctors in the morning to see if I can/should continue with the treatments. I've been told they can give me steroids and more meds in my IV to stop a reaction, but what if it happens again? I got through it like a crazy, strong woman yesterday, but I woke up at 1:30 having myself a good cry over the whole thing because Remicade is really my last shot before having radical excision. My hope is really falling right now. Is all this worth the risk? Sometimes I think yes, because there is no other hope for HS, and then after yesterday, I think no, because I don't want to die at 35 because of a biologic medication. I'm so confused and nervous. I'd just liked to thank God for being with me yesterday and my best friend for being strong when I was looking at her like "oh crap, woman, mayday, mayday!"
deleted_user
deleted_user
Bad news. I can't continue the Remicade infusions due to the nature of my reaction. I'm crushed. It was my last hope for some relief.
spaceteddy
spaceteddy
Oh no!! How awfull for you. Why does this happened to you, I really hoped this was the anwers for you. I can imagine this has crushed you. What a scary experience. I wish you all the best with coping with this situation and figuring out what to do next.
Love and hugs coming your way,

spaceteddy
deleted_user
deleted_user
can't sleep at all again tonight. still feel shaky. i think the remicade reaction really messed my body up. i can't regain feeling okay and just feel so shaky and off I can't stand it. i took benadryl in case it was a reaction coming back since it stays in the body a while. hs has ruined every aspect of my life.
deleted_user
deleted_user
Oh hon I am so sorry to hear this. Optimism is such a killer sometimes. You had no other reactions to the first such infusions...? Was there any other drugs they introduced differently? I know I had a friend on chemo who reacted differently to an infusion and it turns out that they added another drug for nausea that caused the reaction and she continued her treatments. If not, well if it was your last treatment, did you feel some relief? If so well than maybe the treatment you did receive was enough to at least help curb some of your symptoms? Either way, you are not ruined. You have survived 35 years dealing with this terrible disease and can survive another 35 more! You know you can. This is just yet another "bump" in the road. I know you have dealt with many and I am sure it feels like you can take no more, but breath and deal. I tell myself this 150 times a day! Just breath and deal. Take comfort in knowing you are not alone. My thoughts are with you at this trying time. Message me if you need to vent.
deleted_user
deleted_user
Oh my! That sounds so frightening! My dr also suggested trying more biological meds but after reading all the things that can go wrong I was scared to try that again. I had a rough reaction too :( my thoughts are so with you .... It sounds like we are in the same boat with surgery being the only option left. I will for sure keep you posted on my progress after Tuesday! Look up the pig gut powder they are using to reduce my healing time and scaring. I had never been told it was an option till last week!

Sorry for the ramble post!
My thoughts are with you!
deleted_user
deleted_user
I have been in bed since Wednesday recovering from the reaction. Finally, this morning, my blood pressure returned to "normal" 116/86. I have a migraine, but was able to get up and walk around my block this morning. I am still grieving all the hope lost on Remicade, and you know what? It's okay to do that. I've never taken the time to recover from anything, but my body and mind really need the break to figure out what to do and heal. There are some things that break us, and if we don't take time to deal with it, we spend our whole lives broken. Going to see my counselor tomorrow. The disappointment is deep.
deleted_user
deleted_user
I know you are heartbroken now but the great news is that you were still in the facility when the reaction occured. Sometimes it doesnt happen as quickly which can be even more terrifying. Surround yourself with people who love you and mourn your loss. But another thought is Humira or even Enbrel are options and this time they know that you have had an issue they may preload the benadryl and make sure you are safe before intiating any medicatio. The options aren't over they just didnt resolve your issue the way you dreamed of. Cry and mourn but remember God has a plan. I will keep you in my prayers.
deleted_user
deleted_user
I did Humira last year, but I kept getting UTIs and some breathing problems. I appreciate the support and prayers. My best friend and husband cheer me on, but my family either doesn't give 2 poos or they think I'm lazy and vacationing. Who would go on an HS vacation??? The heat is bad for us! LOL
deleted_user
deleted_user
Went to urgent care tonight. My heart rate is still in the 150's even six days later! My EKG was normal. I am on bed rest until my heart rate returns to normal. Hopefully, by Friday, my ticker will take the senior rate. LOL. The Remicade is still in my system and making my heart rate crazy. UGH!
deleted_user
deleted_user
Still no response from my doctor about my continuing high heart rate... I read that if I experienced unusual bleeding I should tell my doc immediately, and I hadn't thought of it before but since my 1st treatment, my gums have started bleeding, I had 3 nose bleeds, and now I'm having vaginal spotting. I called the doc and left a message. I'm so frustrated. The nurse said that if my heart rate doesn't come down i'll have 2 see a cardiologist. I never had a heart rate or blood pressure problemn until I had anaphylaxis from Remicade...
deleted_user
deleted_user
my dr has changed her mind (i don't know why) and scheduled me for another infusion weds despite the bad reaction. apparently they are going to put steroids and benadryl in my iv before the infusion and then if i have another reaction, take it from there. wish me luck?!?!?????
deleted_user
deleted_user
Wow! I will be thinking about you! When is your next infusion?
deleted_user
deleted_user
the infusion is scheduled for 4/16. i'm pretty nervous.
deleted_user
deleted_user
The infusion, my 3rd, was a success. I was given benadryl, pepcid, tylenol, and hydrocortisone in my IV. I am so relieved. This may be my gateway to a happy, HS-remission life!!!
deleted_user
deleted_user
I'm so happy to hear it was a success! Yay!
Posts You May Be Interested In
  • irishwriter

    come unwind in the bp lounge

    Posted by: irishwriter
    Last Reply: irishwriter
    7774
    theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
  • Rizen

    Walk a Day

    Posted by: Rizen
    Last Reply: Rizen
    1444
    I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...