Reaction to Remicade, any thoughts on Humira?

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mtbcubs2004
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 6/2/2008 7:30 PM (GMT -7)   
Hi-
 
Anyone have experience with Humira for Crohn's?  I was diagnosed in Dec of 2007.  Started on Prednisone in February and tapered till the end of April.  I also started Remicade the middle of March.  I had my third infusion April 23.  about a week and a half later.  I broke out in a slight rash, and acne all over my back chest and face. Keep in mind I never broke out when on the Prednisone, only moon face.   GI put me on Benadryl and Zantac for a few days and Prednisone for a week.  My skin is starting to clear up, but I feel pain now coming back in my side.  Interesting, no reaction to Remicade, until after I stopped Pred.  I'm convinced this masked the Remicade.  I also became kind of crazy, losing my mind.  He wants me to try the Remicade again by having me take steroids 3 days before and Benedryl, and see "what happens".  He's convinced in the Remicade that made me better, I'm convinced it's the Prednisone.  My blood work is now normal, but all these side effects made me nuts and the bumps all over me hurt and still hurt.  Has anyone done well with Humira as an alternative to Remicade?  I'm ready to tell him screw it, I don't care what you say, Remicade is not the answer.  Anyone's thoughts on Humira would be appreciated. 
 
thanks, Matt

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 6/2/2008 9:15 PM (GMT -7)   
If you look back through the threads you will find many posts on this very topic.  As for me, I was on Remicade and developed problems/reactions to it.  I am now on Humira and doing wonderfully.  I would take Humira over Remicade any day of the week.  For me it works much better, I have had no reactions and it is so much easier to take.  It is quick shot once every two weeks done in your own home. 

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 6/2/2008 10:04 PM (GMT -7)   
Matt hi and welcome we are glade to have you.I have been on both Remicade and Humira.Remicade helped for a while I was on it for about seven months and I built up what thay call serum-sicknes so I had to come off of it and was then put on Humira and I have been on it for all most four years.When I first put on Humira it was for my RA at the time Humira had not been aproved for the use in people with Crohns all though it was in studys with people with Crohns.So I took my loading does and then every other week I would give my self a shot and I not only showed improvment with my Ra but it was as well helping me with the Crohns.What I hated about the Remicade is that (as you all ready know)I had to go to the treatment center to have the treatment but with Humira (I give my own self a shot) I can give it to my self.Humira is not cheap but speaking for my self it was and is worth every penny.Now it does sting some what and for me it does get a little red around the injection site but it goes away with in a few secounds.There are several people her that take Humira and shure they will be around soon,oh I am for right now taken Humira once a week.Let us know what you choose to do and please know you are welcome any time.
Curley
.........
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/3/2008 5:36 AM (GMT -7)   
Hello Matt,

I took 4 doses of Remicade and felt great. But then I had an allergic reaction to it -- tight chest and red face. So my Doc switched me to Humira but he was cautious because Remi and Humira are related. I took just one pen of Humira instead of the the typical 4-pen loading dose. Good thing too because just one pen gave be full body hives 4 days later! So no more Humira either. I'm on 6mp now.

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/3/2008 5:05 PM (GMT 0)   
HI Matt, and welcome!  I was on Remicade and had a terrible reaction (but everyone is different to meds the same as flare ups) now I am on Humira and as the others I find it way more convienent and two shots a month, some do it weekly, depends on the severity.  I am from Canada and we only have Remicade, and Humira, not Cimzia, they are all biologics but made with different molecules.  Two months into Remicade ,,, had to stop and now going on the ninth week and a shot on Friday, for the most part I am good, takes 3 weeks to 3 months to work.  I always wondered how are docs gonna know which drug is working the one or the other or both.  I take Cipro once a day or I switch to flagyl once a day.  You may need something in the beginning to see how long it takes to kick in, usually a month of no pain, I went 2 weeks so far, and didnt Know I had crohns then, but the last shot 2 almost 2 weeks ago, has been on and off,, fingers crossed, think positive (yeah I know I hate the "Think Positive", I'd be a millionaire by now everytime I hear it, get sick of it) stay stress free, I have had Crohns altogether about 30 years, 15 being the worst.  Good luck, it is YOUR decision, your body, and your future....
 
 
Penny

mtbcubs2004
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 6/3/2008 10:54 AM (GMT -7)   
So far from all these responses, it's making it more clear that's it MY DECISION. My mom has had Crohn's for 15 years and only 2 flares. Hers is in the large intestine, mine in the small intestine. My GI says I was "severely inflamed" and if I stop Remicade or don't take Humira that I'm going to get worse right away. Than he continued to say that all the drugs we have for Crohn's are crap, and that years from now, they'll be calling us "murderers" for the stuff we gave patients. But than he says, "I'll do whatever you decide." lol. wow. It makes me not want to go back to see him.

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 6/3/2008 12:02 PM (GMT -7)   
Wow, sounds like a second opinion might be a good idea, LOL. Your GI has some strong opinions!

I too had an allergic response during my 4th Remicade infusion, and have had no problems with Humira. I take it weekly, and am finally hopeful that I can get off the prednisone once and for all. My symptoms have improved dramatically, and except for some slight fatigue and a bruise around the injection site, I have no side effects from Humira.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
Take Tylenol #3 as needed when not in close proximity to a bathroom.
Put back on 40mg Prednisone again during mid-March flare, ack
4/9/08 Humira dose increased to 40mg/week
Down to 15mg pred


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 6/3/2008 1:25 PM (GMT -7)   

I would be finding another doctor.

I was on Remicade for 2.5 years until I built antibodies to it. Along with the reaction, the drug simply stopped working so I got worse and worse before being hospitalized.

My new GI immediately yanked me off Remicade - said it wasn't working anymore and was causing me to reaction each time. After high doses of Prednisone did nothing, we took a chance on Humira before it was approved by the FDA. It worked miracles within weeks and I was able to eat for the first time in months.

I've had no reactions, not even a site reaction which is relatively common. I don't see the harm in trying it, personally.


Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 5:23 PM (GMT -7)   
mtbcubs2004 said...
So far from all these responses, it's making it more clear that's it MY DECISION. My mom has had Crohn's for 15 years and only 2 flares. Hers is in the large intestine, mine in the small intestine. My GI says I was "severely inflamed" and if I stop Remicade or don't take Humira that I'm going to get worse right away. Than he continued to say that all the drugs we have for Crohn's are crap, and that years from now, they'll be calling us "murderers" for the stuff we gave patients. But than he says, "I'll do whatever you decide." lol. wow. It makes me not want to go back to see him.


Wow. Your doctor needs to learn some bedside manners. Since you seem to lack confidence in him -- I'm being too polite aren't I? -- I suggest getting another GI doctor. Although, if you are severely inflamed your doctor, despite his crassness and lack of bedside manner, is probably right. You will likely have problems soon after going off all medication.

As always it is YOUR DECISION. But with bad information you can't be expected to make a good decision. One way you can improve this is to locate a doctor in your area that has the bedside manners you need and is honest. YOu might be able to do this by asking around local IBD support groups. Another way is to speak to your family doctor and explain the situation you have with your current GI doctor. (That's how I got a better one...)

Another way is to see if there are any study medications at a clinic (possibly the one you're currently going to) and see if you can get an appointment with the doctors conducting the study (I know it's a little dishonest if you're not truly interested in being part of the study... but Researchers are brutally honest if nothing else...)

Once in the appointment explain what your issues are with your current doctor. If you're actually interested in participating in the study it's a bonus to boot as if you like the doctor, and he or she communicates on your level, the doctor may actually see you from then on... This will put you very close to up and coming information on new and better ways to treat Crohn's.

This is sort of what happened with me... only I actually felt comfortable with the prior doc and was genuinely interested in being part of the study... Everyone in medicine that I've spoken to speaks highly of my current doc. This includes nurses, GI doctors, Family Practicioners and other specialists. The same can be said for another person who is part of their organization ... However, I didn't see eye to eye with her and almost didn't go to see any doctors there when my GP referred me to the same organization she is at. I'm glad I reconsidered.

mizdna
New Member


Date Joined Jun 2006
Total Posts : 8
   Posted 6/4/2008 5:39 PM (GMT -7)   
I am so glad I found this post. It was exactly the question I was going to ask. i am so ready to stop remicade. It has been 5 years and I had a reaction at the start. I am take premeds of benadryl and solu-medrol to suppress the rash and shortness of breath. It has been worse since I was pregnant and now breastfeeding as I stopped taking 6MP. This last treatment on Monday was horrible. I came home and got a bad case of the chills, felt queasy and achey, and the headache still hasn't gone away. i plan on talking to my doc about humira. I would love to not have to take anything....
Dx: Crohn's disease, antiphospholipid antibody syndrom 12/2002; ileostomy 12/2002; sleep apnea, 2006, asthma
Meds: Remicade every 8 wks; synthroid, very low dose; Coumidan; 6MP suspended while breastfeeding; flonase; albuterol; flovent; VSL #3 probiotic
Other: saggital sinus thrombosis, 2002, with complete recovery; thyroid nodule


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 6/4/2008 7:57 PM (GMT -7)   
Built antibodies to the Remicade...Now on Humira and feelin' fine...go for it...it's so much easier! You might want to check with your insurance company first though. It may require a letter of medical necessity from your GI if the insurance company hasn't approved it for your treatment yet. Yeah, they think they know more than your doctor(s)! For me the cost for the Humira was actually cheaper than the Remicade and I still had to have the GI's letter. Good Luck!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


mtbcubs2004
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 6/5/2008 10:15 AM (GMT -7)   
Broomhilda, any side effects from Humira? rash, acne, mood swings? I had this all on Remicade. I had little white like bumps all over my face and chest that developed into cystic acne. It's clearing up now (5 1/2 weeks since last remicade infusion)
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