Has anyone switched from Remicade to Humira because of Remicade reactions?

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Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/29/2007 8:14 AM (GMT -7)   
I am presently dealing with my second bout of serum sickness from Remicade.  I got it 2 years ago after 10 months off of Remicade during my pregnancy.  It was horrible.  I have had reactions during almost every infusion since (hives, increased bp and heart rate, tightness in chest).  I recently had to miss my scheduled infusion, and ended up getting it 4 weeks late.  6 days later, the serum sickness started....sore hands and feet soon progressed to every joint aching and burning, cracking, etc., my skin crawling, a horrible headache and sore throat, etc.  I was unable to sleep and was in some of the worst pain ever.  Yesterday I ended up going to the ER because I couldn't take it anymore.  I was given morphine and solumedrol, which helped a lot.  Today I am still hurting quite a bit, but not like yesterday.  At any rate, I never want to go through this again.  I'm tired of it.
 
So my question is, has anyone ever had serious reactions to Remicade, and therefore switched to Humira?  The ER doctor yesterday had a decent idea of what was going on, but we discussed at length the things Remicade can do to you, and both he and the doctor on call from my GI's office suggested it was time to get off Remicade.  I am allergic to 6MP and azothiaprine, and get very ill without the Remicade.  I wonder if I will have reactions to Humira or if, since it is a different type of protien, I will be ok on it.  Also, I wonder if it will do the job Remicade has. 
 
As far as the Humira, how often do you inject yourself?  Do the injections burn or sting when they go in?  I'm not too keen on doing that, but I will do what I have to in order to feel better.
 
Thank you for your input!
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/29/2007 8:44 AM (GMT -7)   
I was nervous about switching after my serum sickness also, but never had to make the decision because Humira ended up being way too expensive for me with the way my insurance works (the Remicade didn't cost me a penny, go figure). I was told there was a good chance I could have the same reactions to the Humira, but many people on here have switched with no problems at all.

It may be worth trying, you can always stop. What else is there for you? I ended up having surgery because I couldn't take the other drugs because of liver issues.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/29/2007 11:39 AM (GMT -7)   
Thank you for the input, Judy. I don't think there is much else for me. Like I said, I'm allergic to 6MP, so I can't take that again. I've been on prednisone for 4 years non-stop now. I don't remember what the reason is, but I can't take methotrexate. Not sure if it's related to the 6mp/azothiaprine allergy, but my GI has said I can't use it. I'm very frustrated. I'm going to my GI on Wednesday to discuss all of this.
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 10/29/2007 11:48 AM (GMT -7)   
I have switched to Humira from remicade and so far so good. I didn't have the serum sickness like you did, I just became non responsive to it. I did my first dose of humira 11 days ago and so far so good. The first injection you have to do 4 all at once then in 2 weeks do 2 then after that just 1 injection every other week. I was really nervous at first because I hate needles and the thought of doing it myself was distressing. I iced the area to inject and never felt the needle at all. I did my first 4 one on each side of my belly and one on each thigh. The belly burned when the medicine went in but it was mild and gradually went away. The thighs burned really bad but went away quickly. I think I almost prefer the mild longer burn to the strong short burn. But everyone is different. I am now almost looking forward to friday when I do my next round. I am not nervouse anymore and look forward to feeling better soon!! Hope things work well for you in the transition over.

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 12:50 PM (GMT -7)   
I may be switching to humira as well. I now give myself daily forteo injections for osteoporosis thanks to the steriods (I only 38) and it's not that bad. I wonder how big the humira injections are? I have horrible side effects from the remicade and am about at my wits end with it. I would like to know as well what made people switch. I have no relief from stomach pain as well on this remicade. I don't know how long it takes to start seeing the "good" effects, if any. I hear around the 3rd infusion, but not me, I'm home sick today from work.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


UKpup
Regular Member


Date Joined May 2005
Total Posts : 213
   Posted 10/29/2007 1:39 PM (GMT -7)   
I was on Remicade for about 15 months or so. I ended up with a lung issue. Since the doctors could only thing of Remicade that caused it, I was put into the Humira Trial. I stayed in it until the drug was approved. Once the drug was approved, I went off it. I'm now in remission and not taking anything.

The big thing for me was getting over giving myself the injections. I never did respond as well to the Humira as I did with Remicade, but like I said, I'm in remission so something must have worked :)

pup
The funny story of my first abscess

The paper about the apheresis study

******************************************
"I've got a fever and the only prescription is more
cowbell." --Christopher Walken
******************************************


ladybugcrohnie
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 10/29/2007 2:42 PM (GMT -7)   
I never had any negative reactions to the Remicade, but it did stop working for me.  I am now on Humira.  I have done six shots total and so far so good. It seems to be helping so I am feeling good about it.  I did 4 shots for the first dose. One in each side of my abdomen and one in each thigh. Not bad.  Then two weeks latter I did two more shots.  One in each thigh.  now I only have to do one every two weeks.  I am using the pen, not the needle and I dont' really think it is that bad.  Stings when the medicine goes in, but then it wears off.  It is worth a try!  Good luck!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/29/2007 3:19 PM (GMT -7)   
I switched to Humira after I built antibodies to the medication and started to react (plus it stopped working!). It was Humira or surgery and I chose Humira. Best decision ever!

I use the syringe only, I am scared of that pen, and the medication can sometimes burn but there are way to avoid too much pain. I do it every 2 weeks and am living symptom free right now.

Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 10/29/2007 7:16 PM (GMT -7)   
I did the first three loading doses of the Remicade and developed lupus-like syndrome so got switched to Humira. The Remicade worked really quickly. I am finding that the Humira is not working as quickly, that I am really nauseous the day after the injection and feel sort of spacey. I used the pen and while it stings a bit it is only for 10 seconds and then its over. So far I have not developed lupus-like syndrome from the Humira.

Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/29/2007 7:52 PM (GMT -7)   
Thank you all for your input. Remicade doesn't seem to be working as well as it used to for me either, so I'm really wanting to give Humira a try. I appreciate everyone's stories.

Pup, congrats on not needing any medications anymore! Now, if you did get sick again and had to start Humira up again, would you have the possibility of having built up antibodies to the Humira and ending up with serum sickness like I did with Remicade? I hope the answer is no!

I will let you guys know what my GI decided on Wednesday when I see her.

Thanks again!
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


UKpup
Regular Member


Date Joined May 2005
Total Posts : 213
   Posted 10/30/2007 7:38 AM (GMT -7)   
Shannon,

Since Humira doesn't have the mouse protein it isn't as easy to get anti-bodies built up, so I think I'm safe. I will say that I didn't use the pen. The stinging was better controlled, for me, using the syringe.

pup
The funny story of my first abscess

The paper about the apheresis study

******************************************
"I've got a fever and the only prescription is more
cowbell." --Christopher Walken
******************************************


Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/30/2007 7:58 AM (GMT -7)   
Excellent. I wondered the same, if the difference in the type of proteins would make for less instance of reactions.

I also wondered about the difference in using the syringes as compared to the pens. Thank you for answering that for me!

I am very encouraged by all the information you have all shared. Thank you so much. I am very anxious to speak to my doctor tomorrow about switching.

You guys are awesome!
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/30/2007 12:35 PM (GMT -7)   
Lisa430, can you tell me what symptoms you had that were lupus like from the remicade?
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade, Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.


Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 10/30/2007 6:30 PM (GMT -7)   
I had a rash on my cheeks that sort of looked like a butterfly and really bad aches in my joints- ankles, toes, knuckles, etc. I had had a lot of muscle aches when I was on the prednisone, but these were in my joints. There is a blood test that they can do to see if you have lupus antibodies in your body but my doctor said somettimes they are there with the remicade and sometimes they are not and that they usually go on the symptoms to diagnose lupus-like syndrome. I did not have a fever, which is charcteristic of the serum sickness people have written about. I still have two red spots on my cheeks that itch but they are not in the shape of the butterfly and I have not had any joint pain since swirching over to the Humira. Unfortunately, it has not been as effective so far as the Remicade was. I hope it kicks in soon.
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