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Side effects of Remicade & Humira?

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Posted 8/18/2008 7:30 PM (GMT 0)
During my last hospital stay, my doctor told me that if my current meds didn't get the job done then I would be headed for Remicade or Humira.  I've heard some things in this forum about side effects, can you give me some specifics?  

Also, these meds are both given via infusion, correct?

Just trying to understand what may be ahead of me...

Thanks!

Posted 8/18/2008 8:03 PM (GMT 0)

Yes there are some side effects you may or may not get I have psoratic arthritis and I take remicade infussion's every 6 weeks. you may get the following:

Soars on insides of your cheeks, Fevers, Flu like symptoms achy body, sinus headaches, your glands get swollen, soar throat, pain in your chest like you have upper respitory infection if you feel any of these things consult your rheumatologist ASAP. But Like everything it takes time on the meds to feel any better.

Remicade is through infussion and takes about two hours to be given at an infussion center and I have been on in for over 6 mnths and I still have lots of inflamation not as much as when I started but still very inflamed my rheumatologist tells me we are getting there little by little I also take Methotrexate 1 x weekly and Prednisone 5mg per day and for the pain I take tylenol with Coediene. When will you start taking Remicade or are you just thinking about it I have spoke to many people on remicade and they tell me you don't feel better for about 1 to 2 years sorry to tell you this but you need the honest truth and I'm here to give it. Let me know how you are doing and if you have any other questions or just want to talk. PR Glo 

Posted 8/18/2008 8:09 PM (GMT 0)
PR Glo - Thanks for the very helpful reply! I haven't made plans to take it, but my doctor is basically waiting for me to give the go-ahead. What you've told me has given me a lot to consider. I just started the Specific Carbohydrate Diet and am seeing some slight improvement. I'm doing it as a last ditch effort before moving to big-gun meds. I hope that it works, but if not I just want to know what's in store for me. I'll definitely keep your name handy if its something I pursue. Its great to have someone to talk to about these things. :-)
Posted 8/18/2008 8:14 PM (GMT 0)
I am interested in the side effect of Remicade too, if insurance moves fast enough *pause for laughter* I will be getting my first infusion this Thursday at 7:30 am.

The sdie effects you were talking about, how long after the iv do those last?
Posted 8/18/2008 8:28 PM (GMT 0)
I've been on Remicade and in remission for more than two years. The only side effect I've had is a little tiredness for the rest of the day after the infusion. My doc gives Tylenol and Zyrtec before the infusion to help prevent allergic reactions.
Posted 8/18/2008 8:43 PM (GMT 0)

Judilyn said...
I've been on Remicade and in remission for more than two years. The only side effect I've had is a little tiredness for the rest of the day after the infusion. My doc gives Tylenol and Zyrtec before the infusion to help prevent allergic reactions.

It appears from your sig that you UC has been in remmission due to the Remicade...that's great news!
Posted 8/18/2008 8:48 PM (GMT 0)
I'd be a VERY happy woman if I went back into remission. *crosses fingers*
Posted 8/18/2008 9:16 PM (GMT 0)
Yes, I flared from July 2001 until March 2006 when I started Remicade. Now taking the Remi, colazal and a good probiotic, I'm in a rock-solid remission. I'll never forget what it was like to go 25 times a day and have constant pain and no energy, though. Remicade was my last try before surgery.
Posted 8/18/2008 11:59 PM (GMT 0)
Judy - Just curious, while in remission can you eat what you want? I'm curious as to what happens if I ever actually achieve remission through medication.
Posted 8/19/2008 12:42 AM (GMT 0)
I've just had my third remicade infusion and there have been no adverse side effects.  On the other hand there is no drastic improvement.  For the next infusion we are going to increase the doseage to 10 mg per kilo of body weight.  I also currently am tapering on the prednisone and this week I take 30 mg daily.  The Prednisone seems to be the only drug that improves my condition.  The diarrhea has been my most common symptom and it subsides some with the Prednisone.  Unfortunately each time I taper off the UC comes back full strength.  I think I am being patient and am willing to wait a long time for the Remicade to work as opposed to surgery.  Good luck and hope Remicade works for you. 

Posted 8/19/2008 1:05 AM (GMT 0)
Kiss, I slowly added things back into my diet, just included spicy and "gassy" foods within the past six months (after a five-year flare, I'm super-cautious.) I eat spicy Mexican and Thai food, broccoli and cauliflower, beans. Still not all the same day, I spread them out. But yes, I can eat whatever I want now. I also take a hefty dose of probiotics every day which I feel helps too.
Posted 8/19/2008 2:54 PM (GMT 0)
My only side effects were that I was tired the day of the infusion which was from the Benadryl and I've just had a constant cold since I started the infusions. The third time I had the infusion, my heart seemed to be racing/beating faster than usual, but I felt normal an hour after the infusion.
Remi hasn't done much for me--it only helped for two weeks after the 3rd infusion. I'm just going ahead to surgery instead of sticking w/ Remi any longer since I was told by 3 surgeons that surgery was pretty much inevitable for me. Anyway, I don't think I could handle a flare while away from home and at college.
Posted 8/19/2008 5:14 PM (GMT 0)
Judy,

Do you remember how long it took for your UC symptoms to subside.
Posted 8/19/2008 5:36 PM (GMT 0)
Kim, I was noticibly better right after my second infusion at two weeks. Less pain mostly. After the third one, I saw fewer stools and no blood, no pain. Over the next year I gradually had more energy and felt better and better.
Posted 8/19/2008 6:16 PM (GMT 0)
now those sound like side effects I could live with (o: How much easier do you find catching a cold since you started remicade or was there no noticeable change in the "catching things" area?
Posted 8/19/2008 7:09 PM (GMT 0)
I've been on Remi for quite some time now and have never had any side effects from it, and almost immediate relief -- the blood stopped right away and the pain was gone. I can say honestly that I prayed for the Remi to work -- I was that sick when I started. As for being more susceptible to colds, etc., I have not noticed a difference and felt my coworkers were sick with more things last season than I was. Just remember to wash, wash, wash those hands. :-) And I also think that Zicam is helpful for me. Good luck, let us know how the infusion goes!

Posted 8/19/2008 10:23 PM (GMT 0)
Kim, I've always had good resistance to colds, and that hasn't changed. I've had one cold since being on the Remicade, and it was no more severe or long-lasting than before. Carol's exactly right - whether your immunity is suppressed or not, the best infection-control measure is hand washing. I've also developed the habit of washing any small cuts or abrasions, putting antibiotic ointment on them and a band-aid. More because of the spread of MRSA than because of the Remi.

Good luck with your infusion, and I hope you have the same wonderful result Carol and I had. I was ready to have surgery because I was so sick.
Posted 8/19/2008 11:16 PM (GMT 0)
I am due for my remicade in about 2 weeks. I can't w8...=) ok so this is what i do i w8 till the next infusion, tiss fun. YaY =) I am always at my best right after my infusion.
Posted 8/19/2008 11:28 PM (GMT 0)
Hi,

     I'm new to this forum.  I was diagnosed with UC in 1998 at age 52, so I REALLY feel sorry for you young people who suffer so with this disease.

     I've been in and out of remission for several years but this past May became very ill with ulcertive proctitis and hospitalized for ten days.  My ulcerations are confined to my rectum and nowhere to be seen further up in the colon.  I still am in a flare.  Meds include 20 mgm of prednisone (actually was weened off but started bleeding again and placed back on), Colazal 750 mgm (9 pills a day), 6 MP 50 mgm per day, probiotic (powerdolphilus 2 per day), Fish oil capsule, one a day vitamin,  and Canasa suppositories nightly alternate with Cort enemas.  My GI wants to put me on Remicade, however, his associate who treated me in the hospital most of the time said NO WAY.  I was exposed to the TB virus years ago when I worked in a lab and also had an aunt (through marriage) who passed away from TB back in the 50's and I was around her quite a bit as a child.  In 1967 before going on a trip overseas I had a positive TB test.  Chest xray normal.  The GI who treated me in the hospital said the Remicade could activate the dormant TB virus in my system and it could actually kill me.  He saw it happen to a patient.  My GI doctor sort of poo poos this and said there are ways to treat it before receiving Remicade.  I'm in a dilemma.  This is the same GI doctor who pushed like Hell to get me on the 6 MP which I thought was going to keep me from flaring and did not!

     Any info out there?  Oh, and the prednisone plays havoc on my blood pressure..really skyrockets.

Posted 8/19/2008 11:42 PM (GMT 0)
You have a tb skin test before starting Remicade. My doctor's group will treat with anti-TB agents before starting Remicade, then monitor closely during treatment. If you don't want to chance this and other treatments don't provide satisfactory relief, surgery remains an option for you.
Posted 8/19/2008 11:49 PM (GMT 0)
Hi , Im very new to this Im an English ex pat living in Gran Canaria and was diagnosed with UC in March i had suffered so long also had a really bad virus one of my main sypmtoms is inflammation in my eyes causing uveitis for which I ended up in hospital. As soon as I was diagnosed I was put on Pentasa mesalazina 2 sachets a day. i was told it was a new and strong and proven medicine on the market. i have to say it is fantastic and I have a new lease of life. Touch wood I have no side effects. But I don't know what lies ahead. I need to study the specific carbohydrate diet for sure. I tend to get joint pain now and a gain and seem to get more tired than before but generally im fine. Would love to hear and comments and help
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