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Humira users - need advice, please.

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Ulcerative Colitis
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Posted 2/13/2012 9:03 PM (GMT 0)
I've been taking Humira for a little over a year now since I was released from my last hospital visit in January 2011. Of course, my first injections were so, so painful and while every following injection was painful I found that I got used to them and the pain was less and less and I never had any side effects.

In the past couple of months the injections are hurting more than ever (or, at least, like the first time...) and now I'm beginning to get big red welts and side effects. Achiness, nausea, itchiness (at the injection site and feet & hands), jabby pains, and EXTREME fatigue. As far as I can tell, it is still working as far as the ulcerative colitis is concerned but they're really making me feel terrible post-injection.

Has anyone else had this sort of thing happen? Where your side effects & pain began mild (or non-existent) on Humira and then every injection afterwards seem to get worse and worse?

It seems like it should go the opposite, right? confused
Posted 2/13/2012 9:54 PM (GMT 0)
I'm not on Humira but it sort sounds like you're developing an allergic reaction. You should notify your doctor. You can also ask this on our CD or RA forum.
Posted 2/14/2012 1:11 AM (GMT 0)
you should definitly talk to your doctor, i looked at the paper that comes with my pens and its says people that has hep b virus has muscle aches. feels tired, fever, chills, stomach discomfort, and skin rash/tenderness. usual allergic reactions are hives swelling of face eyes lips or mouth and trouble breathing but as you probably know already everyone reacts differently to things. i would definitly call your doctor tomorrow and talk to him.

sincerely heath

Posted 2/14/2012 4:12 AM (GMT 0)
Thanks for the input everyone. I'm going to call my doctor tomorrow.

I really hope it isn't Hepatitis B. I'll have to do some research on that. But wouldn't that come up in my normal CBC bloodwork that I have done? I just had some done recently for my internist.

I tried calling the 24/7 Humira help line that apparently has RNs to help you and she couldn't tell me anything other than "those are common side effects" and when I asked her what it means when the side effects come a year after you begin the drug she said "you'll have to speak to your physician" so she could give me no medical guidance whatsoever. I asked what the nurses are there for, and she said to explain the medication guidelines. I said, "I can read those myself." I guess I could have been nice but really, what's the nurse there for expect to answer specific questions about the drug and any and all possibilities? I thought, "Great! They have nurses specifically trained with Humira!" Not the case...

But I called my best friend, who has been an RN for several years, to ask her about a possible allergic reaction and she said it's entirely possible that I could be developing an allergy to Humira now even though I've had no problems in a year. She's had patients who could take penicillan or amoxicillan as a child and are now highly allergic to it as adults. She suggested that first (of course) I call my doctor and if I'm really worried (because I have had allergic reactions to Remicade that entailed anaphylactic shock) I should ask him for a prescription for an epi-pen. My concern is that when I was on Remicade in 2008 I had 4 infusions that went GREAT and then all of the sudden I started my 5th one and within 5 minutes my throat/chest closed up and I couldn't breathe. Thankfully I was in the ATC already and the nurses came in and gave me what I needed to breathe again but it was a scary experience and I don't want it to happen when I'm at home!... and I didn't develop that allergy until 3 months after beginning Remicade. I worry that slowly my body is doing the same with the Humira but I wanted to see if anyone else on here has had a similar experience...

I'm just nervous about my GI taking me off of the Humira because then I'm in a bad place... I've been on everything and nothing's worked...everything but cyclosporine but I hear that it's very toxic and my GI feels it's a last resort. I'm desperately trying to keep my colon. I'm just not ready for the surgery...

Any other thoughts would be greatly appreciated!
Posted 2/14/2012 11:28 AM (GMT 0)
im sorry i didnt mean to give a bad impression about hep b its just what i read on the paper that came with my pens. i believe you are right i get lots of blood work done a cpl times a year and i am betting you do as well so it would probably show up in the tests if you had hep b. its probably a reaction to humira. dont worry to much about things or you will drive yourself into a flare. your doctor should be able to do a little more research and i am sure there are tests to find out about your reaction. the way i understood it is that your body can build up antibodies to the meds like humira and they become less effective. thats what happened to me with remicade. the important thing is not to get worked up about it and relax whatever happens your doctor will do the right thing for you and you will be okay. at times i get a bit of a rash but it fades in a day or two and the spot i inject at if i dont rotate different spots gets tender as well. have you tried your thigh instead of your belly? hope you have a good day.

sincerely heath

Posted 2/14/2012 2:49 PM (GMT 0)

I've been on Humira for a little over 2 years now, & in the past 2-3 months have developed an allerigc reaction to it- I break out in a horrible, itchy rash all over my arms & legs. The med works pretty well for me, & apparently skin rashes are a common side effect/reaction, so I don't want to quit it either! I just went for a yearly physical a week or so ago, & my PCP suggested I try Benadryl the day of my shot, & for a few days after. He also gave me script for triamcinolone cream, which has helped greatly. The last time I did my shot I took the Benadryl for a couple days, & used the cream. No more rash! Until last night, when it cropped up again- I used the cream & it's already nearly gone. I guess I'll have to plan on using it once a day, at least. But, you could try Benadryl before your shots, see if it helps. I never experienced that much pain, aside from the obvious injection pain. Good luck! Those Humira nurses are a joke, I called them once also & got nothing.... I think it's just a way for the manufacturer to cover their butts in case of lawsuits! I haven't told my GI about this new reaction, because knowing him he'll say to quit the med- I see him next month & will discuss it then, after a few more shots.

Posted 2/14/2012 3:29 PM (GMT 0)
Eva, I definitely feel like we're in the same boat. I, too, fear that if I say something to my doctor he will remove me from the drug and then I'll be in an even worse position, I fear.

I will try the Benadryl, since that's been suggested a lot. I think I'll tell him about the allergic reaction and my fear of maybe something worse happening after an injection and maybe ask if he could write me a script for an epi-pen just to ease my mind.

Heath, don't worry. I'm not freaking out too much yet. wink

Today I feel better. I got the shot on Sunday night and so yesterday was what I call my "Humira Hangover Day" but today all signs of Humira intake are gone except for the itchiness and the welt. (which I can deal with...)

As far as site spots, I've had it in my thighs, stomach, and back of arms. The thighs hurt the WORST for me so I don't ever want to do that again. The back of the arms hurts the least and then the stomach is somewhere in the middle. The welt stays the longest when it's on my stomach and I know it sounds crazy but I hate that injection site because then just walking the next day hurts because of the vibration of walking. (and I'm not even nearly heavyset! I've actually always been quite a tiny person - 104 lbs.)

I will call my doctor today and tell him what's going on but make it clear that I do not want to quit the Humira. I think he'll listen and hopefully have something helpful for me -
Posted 2/14/2012 4:33 PM (GMT 0)
Hi Katy,

I've been on Humira for 2 years now... around 6 months in I began to get itchy red welts following my Humira injections, and they lasted about 1-2 days each time for a period of a couple month. I, like you, was scared I was becoming allergic to the drug (as I had a severe allergic reaction to 6MP). After those first couple months, the welts started getting smaller and smaller, and less itchy as well. I'm not saying don't check it out and do your due diligence, but it is possible this is temporary and will go away as it did with me (hope so!)

Regards
Posted 2/14/2012 5:26 PM (GMT 0)
my GI is good in that unless it's some crazy life-threatening reaction, he'll leave the decision to me, to deal with the rash & side effects of Humira. Definitely try Benadryl- it knocked me out for those few days, I took it about 2x a day for 2-3 days, & felt like a zombie the entire time. Just tired!!!!! but hey, I can deal with that for a couple days. My opinion- I'd try the Benadryl first, before talking to your GI- then you can tell him if it helped or not, etc. Unless you have trouble breathing or something, it's not likely to warrant an epi-pen type med. You're right too, the thighs hurt SO BAD! I do my shot in the abdomen, always. Sometimes it leaves a painful welt for a day, sometimes not, it's totally random.
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