delayed allergic reaction to remicade

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trickynikki
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Date Joined Jul 2003
Total Posts : 481
   Posted 2/7/2008 3:30 PM (GMT -7)   
So, I've been having joint pain for a while, which between Remicade infusions would get so bad that I wouldn't be able to move at all without severe pain. At first I thought it was crohn's related arthritis, but it didn't really seem to make sense. I had never had any joint pain before the Remicade, and even after infusions I would only feel better for about a week. The joint pain was accompanied by a sore throat, difficulty swallowing, and swollen hands. Apparently these are symptoms of a delayed reaction to Remicade, which took forever for my doctor to figure out! She only figured it out after my suggestion of it as well (little bitter). So, after I put myself on prednisone, she agreed that that was the right course of action. She wants to start me on Humira, but I'm really scared since I still feel like crap from the Remicade, and I'm afraid of another reaction. I was wondering if anyone here had a delayed allergic reaction to Remicade. And if so, how long did the symptoms last? Did anyone go from Remicade to Humira because of an allergic reaction? And if so, did the Humira affect you? I trust all of your advice and opinions much more than my dr's! Thanks in advance!
~Nikki


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/7/2008 3:58 PM (GMT -7)   
This is pretty much what my Daughter is experiencing also. She has been on Remicade for almost 5 years and double dose on and off for the past year. Her delayed reaction comes a little bit later than yours and I assume she is building up antibodies.

In doing some major reading/research of late because my Daughter's GI wants to try triple dose Remicade (which is pretty unheard of) to boost her response as he is not ready to switch her to Humira yet. I found that delayed reaction should be treated with 650-1,000mg Tylenol and/or 50mg Benedryl and if neither of them work a Medrol pack.

Yes, many patients move to Humira when Remicade isn't cutting it. Some patients do well with the switch but only 20%. Would be really hard to say if you would have a reaction to Humira. Humira doesn't have the mouse protein in it so many patients tolerate it better than Remicade.

trickynikki
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Date Joined Jul 2003
Total Posts : 481
   Posted 2/7/2008 5:20 PM (GMT -7)   
Thanks for your reply Mary. I'm sorry to hear about your daughter. I hope she finds some relief. :) Are you considering the triple dose of Remicade? Remicade is scary.... The severity of the symptoms I felt from the allergic reaction were truly up there with the severity of my symptoms of my complete bowel obstruction. Both were completely unbareable. It just took a lot longer to be taken seriously with my joints. I know Remicade works really well for some people, but I could never in good conscience recommend it to anyone, as it did nothing but bring more pain to my life. I don't know if this could be helpful to your daughter or not, but someone (I think on here) said there is a simple blood test to see if you've built up antibodies. My doctor didn't do the test (they are completely not on their game regarding this issue), but maybe it could be something that would help your daughter. Good luck!
~Nikki


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 2/7/2008 5:39 PM (GMT -7)   
Nikki, (also my Daughter's name)

My Daughter's GI is pretty certain that she is developing antibodies because of her almost 5 year use of Remicade. For some reason, and I guess because her GI is a pretty renown GI/Immunologist/Researcher/Educator out of New York Mt. Sinai he wants to try Triple Dose Remicade
to see what her health response would be. I was not thrilled hearing this on Monday, but trying to have faith that this top notch Person knows what the heck he is doing. I've spent hours reading a ton of his research work online and he is definitely "no schmuck". He claims he has current patients on triple and even quadruple doses of Remicade. Scary?? Without a doubt. I was scared when my Daughter first started single dose!! My Daughter is willing to be a guinea pig I guess. Hopefully, not at a great cost to health. First, she needs to find out if her Insurance will even pay for it. They have been paying for double dose, but they may not find Triple dose cost effective and recommend something cheaper, like Humira.

Her GI is not feeling the love of Humira for her yet. He seems to think it might not be the way to go with her and that it might not be effective, which I get, because as I said in other post only 20% of patients make a smooth transition from Remicade to Humira with good results.

Here is to hoping that you can find your "magic med" soon. Such a cr*ppy, frustrating disease IBD is!!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/7/2008 9:28 PM (GMT -7)   
Nikki,
I knew it was time to get off the Remicade route when I felt worse AFTER the infusions than I did before them. I would get an infusion and then develop bad, overall muscle and joint pain. Mind you, I have a type of arthritis that causes lots of joint pain, but this was different. Then the doctor started premedicating me with steroids before the infusions. That worked a couple times. Then in spite of the short burst of prednisone, I would rebound with even worse problems.

GI took me off Remicade and started me on Humira. I had the first four loading injections, two weeks later the two injections and then began the every other week injections. I did a total of 7 rounds of treatments. I started running fevers after the 3rd round of Humira. GI got worried. Two days after my last injection in the beginning of December I had the mother of all reactions. I was so ill that I could not move due to fever and joint and muscle pain. Ended up needing 10 days of steroids. Developed chest pain and EKG changes that had the doctors wanting me to stay in the hospital for observation, etc, etc.

Not trying to scare you. My GI told me that people that develop a reaction to Remicade have only a 15% chance of being successful on Humira. I would go ahead and try it, but if you develop any abnormal symptom, see your doctor ASAP. I waited thinking I could "tough out" whatever was going on and harmed myself in the process.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/7/2008 10:21 PM (GMT -7)   
Oh man, this happened to me! In November, I starting having horrible joint pain, I have never had a joint pain in my life. I told my GI I thought it was the Remicade and he said no way, it would be an immediate reaction, no such thing as a reaction a week after infusion and to get my double dose again in 6 more weeks. Well, during that infusion, I was itching all over, they slowed it down and the itching stopped. Then I had SEVERE charley horse cramps in my calves for about 15 hours. A week later, I had joint pain in my wrists, fingers, knees, etc SO INTENSE. I took several different painkillers and no relief. I had to take Prednisone for a week. Again, GI said no it's not the Remicade, too late of a reaction, but you "might" be developing the antibodies... UGHH. I am trying Humira on Monday. I am scared. I think doctors need to learn that it IS possible to have a delayed reaction! I am disappointed to hear 15 or 20% of people do well on Humira after Remicade. :(
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


Kelli_H
New Member


Date Joined Feb 2005
Total Posts : 1
   Posted 3/10/2008 4:30 AM (GMT -7)   

Hi guys,

I've had RA for roughly 23 years and had my first Remicade infusion last September. Throughout the week following the infusion, I started to feel achy, tired and eventually had flu like symptoms...I was taken to the ER and things went downhill from there. My blood pressure bottomed out and I stopped breathing. 10 days later I got out of the hopital, 6 of those in the ICU. The belief is that I had a severe reaction to the mouse protein used in Remicade and after a lot of research, I do believe that. I used both humira and enbrel before with no adverse side effects but they didn't help my RA. Orencia is where they want me to go now but I'm not quite ready mentally for another infusion. I hope this information helps.

Take care


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/10/2008 12:28 PM (GMT -7)   
My reaction was not as severe as some of the people's who have replied, but I took Remicade for amost a year with no problems.  Then, I developed sudden severe joint pain 3 days after an infusion (usually felt the effects of the Remicade 3 days later).  In the next month or two, I started having allergic reactions to the Remicade.  Kept trying to premedicate, take the infusion over a longer period of time, move from home nurse to the hospital, etc., but never really could take it again without any problems.  Evidence of antibodies developed much earlier than all of this, which is when we increased from every 8 to every 6 weeks.  Now, I am participating in a clinical trial for Cimzia, which is similar to Humira.  I haven't had any reactions (other than injection site) yet and it's been a year.  My GI said that if Cimzia helped, Humira should also.  My only problem is that it now seems the drug isn't helping as much, so I may be building up antibodies to this one.  Humira will be the next one we try. 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 3/10/2008 1:30 PM (GMT -7)   
I had a horrible experience with remicade and after 3 infusions, I gave up on it. I was tired of being sick for a month after the infusion. They wanted me on Humira afterwards but right now I'm on a break and am hanging in there until we decide what to do. The doctor have scheduled a colonoscopy to see what is going on before we try another medication.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf, adverse reactions to Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 3/10/2008 5:19 PM (GMT -7)   
princesscolon, I asked my doctor about the 15%-20% of people doing well with humira when they had a reaction to remicade. He said, while that was true, in the study they included people who didn't respond well to remicade symptomatically as well as those who reacted to the remicade. He said the percentage included a larger group than just those who reacted. Hopefully that makes you feel a little better!
Jenn4dex, I am in the same situation as you right now! After my reaction to the remicade my doctors wanted to put me on humira directly. I also decided to take a break until I can feel good about another decision. I've also altered my diet to cut out sugar and hard to digest carbohydrates. I've done well on this kind of diet before so I'm hoping it will work again. I feel good now, but I'm still on 15 mg of prednisone from the remicade reaction. Here's to hoping we'll do fine without humira!
~Nikki


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/11/2008 7:27 PM (GMT -7)   
Thanks for that info, Nikki. I am having truble getting Humira because my insurance won't cover it for UC. My last Remicade infusion was in December. I am starting to flare up now. My GI hinted to trying the Remicade at the lower dose and with Prednisone at least till I get the Humira problem straightened out with my insurance. I said I was too frightened to. Now after reading this I am glad I didn't let him put me on Remicade again! EEK! I hope the diet changes help you.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


mommdisme
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/19/2008 11:32 PM (GMT -7)   
Any allergic reaction mean that's your developing anti-bodies, which means the Rx won't work well! Get off it, it's not doing any good it the side effects are worse then Rx.

onebloodonelife
Veteran Member


Date Joined Feb 2006
Total Posts : 842
   Posted 3/20/2008 6:54 PM (GMT -7)   
I had been on Remicade nearly a year, and it had never worked the full 8 weeks, so we moved to 6 weeks. Eventually, that wasn't enough either, so my GI doubled the dose. On that first infusion with the doubled dose, I got lightheaded during the infusion, but didn't say anything to the nurses because I thought it wasn't a big deal. After a week, I developed excruciating joint pain and splotchy rashes on my forearms. My GI agreed that it was a delayed reaction (after testing me for Lyme's disease) and said it was probably the lupus like reactions that can occur. I've been on Humira since September, after fighting extensively with my insurance company because I hadn't turned 18 yet. I've been in remission since, so I guess I'm in that percentage that can switch from Remicade to Humira without issues.
Crohn's Disease for two years and counting (diagnosed March 8th, 2006)
Imuran: 150mg
Humira: finally got approval on 9/21, done with loading doses, starting biweekly schedule on 10/10
Dicyclomine and hyoscamine for intestinal cramping and spasms
www.myspace.com/onebloodonelife


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 3/21/2008 9:49 AM (GMT -7)   
I think what I find most alarming, is the amount of reactions that are coming so late in treatment. When I had my reaction
it was on my 4th dose & went into anaphylaxis.

Now a year or so later, I'm injecting Humira, loading dose went well. but I'm now into my 7th dose, and I'm getting progressively
worse. The doc has told me only 2 more shots, as it's raising my liver enzymes & not working to reduce my symptoms..

I guess my fear is what is going to happen to us all in the long term. I know these drugs are a miracle cure for thousands,
but they are such toxic drugs... I sure hope it wont be like another thalidamide.....but in a different way!!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/26/2008 6:26 PM (GMT -7)   
I have been on Remicade for a little over a year. I started having a rash about 4 months after starting Remicade than last October I started having severe joint pain. They finally did a blood test after I tried and tried to tell them I felt like I was not responding. Two weeks after a Remicade infusion I did not have a trace of it in my system!! The doctor took me of of Remicade and started me on Humira. The first dose (4 injections) went alright, a little redness and rash around the injestion site but that was it. The 2 dose (2 injections) seemed to be alright then about 3 hours later I began breaking out. After calling my doctor and having a prescription mishap (not called into pharmacy) I ended up in the ER with a severe allergic reaction. I have a extremely itchy rash all over my body. The ER loaded me up on steriods and prescribed some antihistamines for the itching but after a week I am still breaking out and I am miserable. I was hoping Humira would be my miracle drug, now we are just going to continue with the 6MP. Wish me luck.
Just "Beachy"


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 3/26/2008 6:37 PM (GMT -7)   
By the way Beachy -- My Allergist talked to Abbott who makes Humira. It stays in your body 10 - 20 days. My hives kept trying to break through the steroids because the Humira was still persisting in my body. The hives stopped growing on day 18! Stay on steriods until the Humira clears your system!

Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/26/2008 6:59 PM (GMT -7)   
Thanks for the info. I just made a surprise visit to my doctor today to show her that I was still breaking out. She acts so surprised with my reaction. She finally put me on Predisone instead of just taking the benedryl she originally suggested. I can't wait tell I reach day 20.
Just "Beachy"


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 3/26/2008 7:12 PM (GMT -7)   

One more thing Beachy -- my allergist prescribed me Allegra in case I got itchy.  She said it works better tham benadryl and is non-drowsy -- but to also take the full course of steroids.  I never took the Allegra  so I don't know if it works.  Seems you took all my hivey itchiness because I had none!  Thank you for being so thoughtful!  tongue

I am so sorry you are having such troubles!  Shame on your Dr for not wonderiing if Humira is time-released -- which it clearly is with dosing every 2 weeks!   All my Drs are with a good teaching hospital and I think this makes them a little more open to researching and new thinking -- and talking to other Drs.

I hope you feel better soon!

gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 3/27/2008 10:14 AM (GMT -7)   
have the antibody test done. it takes about 10 days to get back, but if you've developed them you need off remi. i haven't had remi for 8 weeks and my joints are terrible. i've been on alternate day therapy of pred for 7 weeks, that seems to help along with ultram round the clock and lortab only when i can't stand the pain anymore. i also get this rash every few weeks. one doc says it's the remi, another says its immune mediated. i start the humira study for uc in a few weeks. wish me luck!
Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


Jeny
Regular Member


Date Joined Feb 2004
Total Posts : 437
   Posted 3/27/2008 10:56 AM (GMT -7)   
your story sounds just like mine! i had the same joint pain with Remicade. i was to the point of walking with a cane for 2 weeks after infusions. my last 2 infusions gave me hives. after the last infusion, the doctor decided to stop the remicade. i was on prednisone for 3 months to keep the hives away. it took about 4 months for the remicade to completley leave my body and be back to normal. my immune system has never been the same since. i get hives every time i run a fever and i get every cold/flu that walks by me. at the time Humira was not FDA approved so, being that i had tried every other drug out there, the doc decided to keep me drug free until i have problems. that was 4 years ago! she says that she want me to try Humira if i get a flare, but i've been extremely lucky so far. i think pregnancies and breastfeeding have kept off the crohn's for me.
good luck! keep us updated, i'm curious to know how you react to the Humira.
-jeny

Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/27/2008 8:48 PM (GMT -7)   
Started the Predisone yesterday. I'm taking the Predisone, 6MP, and Hydroxyzine for the itching. I rash just keeps coming. It seems to get worse in the evenings. I have not slept for 2 days. Every time I go to bed I get warm and the hives get worse. My skin just crawls and I can't stop myself from scratching. I decided to add alittle Benedryl to the mix tonight to see if I can sleep. Wish me luck.
Just "Beachy"


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 3/27/2008 9:19 PM (GMT -7)   
Oh Beachy. After reading your post, now I feel itchy!!! I got hivey on the first Humira treatment. I am so glad my Dr. was cautious (because I had reacted to Remicade) and had me take only 1 pen. I can't imagine what would have happened if I had taken the typical 4 pen introduction!! Yowza!!

What day is this for you from the last Humira?

Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/28/2008 7:00 AM (GMT -7)   
Fallcolors-
Today I am on my 9th day. I actually got about 4 hrs of much needed sleep last night. It seems so weird now that the rash comes and goes during the day. Even though you sometimes can't see it the itching is horrible. Of course, my husband is out of town and I have a very active 14 yr old and 7 yr old. I don't know whats keeping me going....but I'm going.
Just "Beachy"


pilchmin
New Member


Date Joined Mar 2008
Total Posts : 9
   Posted 3/28/2008 12:49 PM (GMT -7)   
I do well on the Remicaide but the Humira gave me hives all over my face that lasted for weeks.  They would not last all day but for an hour or 2 every day.  Until the medicine got out of my system.  I did notice that the back of my head itches, it was not itching the whole time I was off the Remicaide and now taht I am back on it is itching again.   

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/28/2008 7:49 PM (GMT -7)   
Beachy -- try calamine lotion for the itching -- the lotion used for poison ivy. It might help!

Just remember it will get better! It will go away! Every day is one day closer to the drug being out of your system! Yea!!! I am praying you are almost through!!
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