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Posted 4/6/2009 2:12 AM (GMT 0)

Hi-I haven't written in a long time.  I hope everone is doing ok.  I need some unput here.  I'll post this in the Arthritis and Crohn's message boards.  I took Remicade about 7 years ago.  It was wonderful for my joints and for the CD.  I had a site reaction and my Dr. at the time didn't want me to continue.  I've tried most everything out there at this point.  I have a new RA Dr. who said she thinks with the proper pre-meds and dosing  she could give it to me safely. Well, we did one infusion with no problems until 7 days later.  I developed the most unbelievabls case of hives you could imagine.  I started vomitting and had fever.  Dr. sent me to the ER where they treated the symptoms.  I noticed the 2nd joint on my right middle finger seemed extra sore but didn't think much of it since I have RA.  Two days later when I woke up, I could not use my hand.  The joints were so swollen and unvelievably painful that I could not even brush my teeth.  I also noticed the bottom of my left foot getting sore right where one of the toe joints would be.  When I woke in the middle of the night and got up, I could put ZERO pressure on my right hand/wrist and now my right foot/ankle.  It was extremely swollen.  As the next couple days, my knee, my hip, elbows, shoulders, feet, were all affected.  I was effectively paralyzed but I could feel everything but the pain was so excruciating that I couldn't move.  My husband had to practically carry me and set me on the toilet, pick me up off of it, and even feed me.  My Dr. just kept saying that I must be allergic to something and it's not the Remicade because it had been 7 days afterwards when all this started.  Then I got another fever.  She had me come in and she prescribed me Oxycontin for the pain.  She encouraged me to take my next dose of Remicade because she says this is due to the RA not the Remicade and the Remicade will help.  Against my better judgement I did it.  Within 10 minutes, I had a fever of 103.  I had the reddest face and neck you can imagine.  I began having trouble breathing.  My blood pressure was 110-97.  They would administer a steroid and Benadryl via IV and the fever would immediately drop and the BP would go up to normal or even pretty high.  This lasted a coupe hours.  Obviously this is a reaction to Remicade and I will never take it again.  But when my blood work was taken, this is what came up...CRP-260.  Sed Rate180.  High LIver Enzymes, High Platets. HIgh WBC.  A retake last week (2 wks after this happened) my levels are better with a CRP 90, Sed Rate 60, and still high liver and platlets.  I am still getting hives and get tightening in my chest.  I don't have am internist or family dr. right now because of my insurance changing.  I want to make sure I shouldn't be doing anything.  She wants me to continue only Methotrexate right now.  Any input or experience is greatly appreciated.  I've just never felt this badly before.  Thanks.

Posted 4/6/2009 2:21 AM (GMT 0)
I'm sorry this has happened to you. A reaction to any of these important meds is so devastating and frightening.

I too had the hives and the paralysis, exactly a week after infusion. The information on delayed reactions is out there, on the net and in the official medication information, but it's surprising how few medical people are willing to look up and use that information. Me, I was also told that a delayed reaction was impossible, and was SENT HOME from the hospital with a warning that I wouldn't be treated if I turned up there again complaining about a delayed reaction (!!!), and it took my specialist's intervention to get me back in hospital and getting the treatment I needed. By that stage, of course, things were really getting out of hand...

I'm not sure what purpose this post has, except to say that you're not alone, and I really do sympathise with what you're going through. Have you used any of the other anti-TNF meds yet?
Posted 4/6/2009 2:27 AM (GMT 0)
I have used Humira which didn't help. The other thing I am having all of a sudden is night sweats...like soaking wet night sweats.  Is there further care I should be seeking or will it just run it's course?
Posted 4/6/2009 2:46 AM (GMT 0)
I do feel that you need to tell someone about those night sweats. They may be completely inoccuous, part of the Rem reaction, but I think you and I know that they can also be symptoms of some other conditions, so should probably be checked out.

So do you have a gastro or a rheumie or *any* specialist doctor at the moment, or are you just relying on your GP?
Posted 4/6/2009 2:28 PM (GMT 0)
No, I only have a GI and a Rheumy and no GP at the time. I will tell about the night sweats today. THanks! Have a great day.
Posted 4/6/2009 2:34 PM (GMT 0)
There is a long post on this site on just this very topic- think it is findable under "Remicade reaction-antibodies". Many folks have had delayed Remi. reactions, and they sound just like yours. Hang in there. Do you know if it is the overall quantity of remicade or the dosing schedule that typically causes the antibody build up? Hmmph, just wondering.
Posted 4/6/2009 3:20 PM (GMT 0)
I have been searching the site, thanks-there is some good information. The day that I had the reaction while sitting in the chair, the had me going really slow. 10 minutes had passed and I had only gotten about 5 drops she said. I believe the overall quantity was 6mg/kg. I think it's because I had not taken it in 7 years or so. I had taken my first dose and then two weeks later my second. I was scheduled to get a third 4 weeks after that.
Posted 4/6/2009 3:53 PM (GMT 0)
I have heard, like you all have, of the delay reaction to Remicade, and have heard of the paralysis as well. I'm appalled with some of your doctor's responses, i.e. don't come back here, or delayed reactions couldn't possibly occur 7 days later when it specifically says in all the medical literature I received from my doctor that it could be anywhere from 3 - 12 days after the infusion. No one should have to go through that, and then have a doctor tell them that it's not what they think it is and its impossible.

Sorry, had to vent for a minute.....
Posted 4/6/2009 4:12 PM (GMT 0)
well, thanks for the support. I am just kicking myself for not listening to my body. I know better than that by now.
Posted 4/6/2009 9:58 PM (GMT 0)
You know, in my case, I actually told the ER doctors where they could find the information about delayed reactions on the net, told them that it was on the drug manufacturer's website and not on some kooky personal web page, and they *still* REFUSED to walk over to their desk and look it up.

Four years on and I'm still very angry about it. Fancy sending someone home from hospital when they are experiencing a spiralling drug reaction, and then telling them that they will not be treated if they return to the ER complaining of more reaction symptoms... Where is the patient supposed to go for help in that situation? I ended up losing my voice as well; if I didn't have a relative with me I would have been unable to call for help...

(Sorry Krons; I know this is your thread; didn't mean to share my whinges so extensively :-) )

Ivy.
Posted 4/6/2009 10:16 PM (GMT 0)
that's ok Ivy...that's why I posted it. i wanted some experiences. I match every symptom of serum sickness and the Dr. still says there is "NO WAY" that it was from the Remicade. Ridiculous.
Posted 4/6/2009 10:33 PM (GMT 0)
Krons, what I often suggest to people in this situation is to actually print off the information from the drug manufacturer's website, highlight the relevant bits, and show them to any doctor who says that a delayed reaction is impossible.

Here you are, here are pages and pages of references.

If they don't read and pay attention at this point, I think it is very fair to call them negligent.

Ivy.
Posted 4/6/2009 10:38 PM (GMT 0)
The link isn't working...
Posted 4/6/2009 11:26 PM (GMT 0)
Interesting. I wonder why not? Oh well, it was only my results page from Googling

infliximab "delayed reaction"

You could do the search too.

Ivy.
Posted 4/7/2009 3:39 AM (GMT 0)
I was allergic to crohn's but it took three months to appear and was only hives and spots and flu like feelings. My joints hurt like yours but I could kind of walk. Not hold anything in hands very well. I had to crawl on hands and knees to get around for two weeks or so. then it started to leave the body and I got way better (Darn, still had crohn's) I won't even try humira because I'm too afraid of the reaction it might have.

Your experience seems like it would be terrifying!! I wasn't half that bad. To feel better I sat in a warm bath at least half of every day for awhile. Slept as much as I could and drank lots of liquids. Finally all the reaction was gone.

Hope you can see the RA Dr. or GI Dr. soon. Too serious to ignore.
Posted 4/7/2009 5:07 AM (GMT 0)
For your hives, you can apply vitamin D3 oil directly to the skin to control the reaction. See: Topical vitamin D3 downregulates IgE-mediated murine biphasic cutaneous reactions. This is a mouse test, but it was done using allergy vector IgE, so it should apply for allergic reactions. Vitamin D3 also is a general immune system regulator and would be useful for controlling the general inflammation from the allergic response. Common recommendations for dose are 2000 IU daily. Deficiency of D3 has been implicated in the development of several auto-immune diseases including IBD/Crohn's, so a supplement may aid your health generally. The most common symptom of D3 deficiency is generalized pain and weakness or debility. This can be easily misdiagnosed by doctors and is often just given a name and treated for symptoms only.
Posted 4/9/2009 6:12 PM (GMT 0)

mad  kronstoolong said...

Hi-I haven't written in a long time.  I hope everone is doing ok.  I need some unput here.  I'll post this in the Arthritis and Crohn's message boards.  I took Remicade about 7 years ago.  It was wonderful for my joints and for the CD.  I had a site reaction and my Dr. at the time didn't want me to continue.  I've tried most everything out there at this point.  I have a new RA Dr. who said she thinks with the proper pre-meds and dosing  she could give it to me safely. Well, we did one infusion with no problems until 7 days later.  I developed the most unbelievabls case of hives you could imagine.  I started vomitting and had fever.  Dr. sent me to the ER where they treated the symptoms.  I noticed the 2nd joint on my right middle finger seemed extra sore but didn't think much of it since I have RA.  Two days later when I woke up, I could not use my hand.  The joints were so swollen and unvelievably painful that I could not even brush my teeth.  I also noticed the bottom of my left foot getting sore right where one of the toe joints would be.  When I woke in the middle of the night and got up, I could put ZERO pressure on my right hand/wrist and now my right foot/ankle.  It was extremely swollen.  As the next couple days, my knee, my hip, elbows, shoulders, feet, were all affected.  I was effectively paralyzed but I could feel everything but the pain was so excruciating that I couldn't move.  My husband had to practically carry me and set me on the toilet, pick me up off of it, and even feed me.  My Dr. just kept saying that I must be allergic to something and it's not the Remicade because it had been 7 days afterwards when all this started.  Then I got another fever.  She had me come in and she prescribed me Oxycontin for the pain.  She encouraged me to take my next dose of Remicade because she says this is due to the RA not the Remicade and the Remicade will help.  Against my better judgement I did it.  Within 10 minutes, I had a fever of 103.  I had the reddest face and neck you can imagine.  I began having trouble breathing.  My blood pressure was 110-97.  They would administer a steroid and Benadryl via IV and the fever would immediately drop and the BP would go up to normal or even pretty high.  This lasted a coupe hours.  Obviously this is a reaction to Remicade and I will never take it again.  But when my blood work was taken, this is what came up...CRP-260.  Sed Rate180.  High LIver Enzymes, High Platets. HIgh WBC.  A retake last week (2 wks after this happened) my levels are better with a CRP 90, Sed Rate 60, and still high liver and platlets.  I am still getting hives and get tightening in my chest.  I don't have am internist or family dr. right now because of my insurance changing.  I want to make sure I shouldn't be doing anything.  She wants me to continue only Methotrexate right now.  Any input or experience is greatly appreciated.  I've just never felt this badly before.  Thanks.

Sorry to here your having problems with your Remicade i to had bad side effects with both the study and then i was put on it down the road to see if it would put me in remmission clearly it hasnt,i also have arthtitis myself and my bones jurt so bad some days i cant get out of bed the remicade didnt help my bones at all nor my crohns disease i am now on humira i also tried methotraxate it didnt work for me either i am hoping that the humira does its job just got out of the hospital yesterday feeling pretty low still i also have fibro so i hear you i know somewhat of the pain your going through it can be crippling that is for sure some days i lay in bed for hours untill my pain meds kick in and when it is going to rain or is raining i go through pure hell devil its really damp down here today and my lower back is driving me crazy so is my knees and hands,neck,shoulders i could go on but i wont,i had a nagging fever on all the immune supress drugs and get that weak i can bearly get out of bed in the mornings i to was on oxycontin now i am taking hydromorphone contin30mg for slow release and hydromorphome contin16 for break through pain as well as buscapan and of course all the other meds for my sleeping disorder which is from my fibro i take 3 different sleeping pills and lorazepam,ketoprofen,trazadone,zopliclone,anitripline,fosamax,celebrex,b-12 injections,iron injections,tylenol arthritis and some i can not spell or even say for that matter.I get really red faced as well from these immune meds like i am having hot flashes only i think i am to young maybe not but it feels like my face is on fire the sweat is rolling down my head,face,neck and my hair is soaked as well it goes like that from taking steriods to how about you.Has anyone out there quit smoking to help there crohns or are you all still puffers i smoked since the past 15 years anyway i find it relaxes me it doesnt cause me any more problems then what i already ahve that is.Your blood work is out of wack for sure maybe you should be in hospital till they find something that will work for you,as for the trouble you have breathing the doctor told me i do because i have so much swelling in my belly and its pushing on my diafram which in return causes breathing diffuclts could that be something that maybe your having also.Keep me posted on how your doing i hope you get some relief soon pressure those DOCS of yours someone has got to help you,i hope some of this info helps you if you need more just send me a message.Your bowel buddy Jenn yeah

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