Well my long awaited Humira injection has happened, and I started to feel much better within just two days and was almost pain free after three days. No injection site reaction or other notable side effects. All good, and I thought, YES this is it…until nine days in I started feeling really unwell with jittery, jumpy heart and trembling inside followed by stabbing pains in the stomach and really heavy and painful muscles all over. Next morning the injection site was swollen, red and itchy and about four inches around. I felt dreadful. At one point I thought I was going to faint. Then last night the hives showed up - abdomen covered then quickly spread to thighs, then back and chest. Spent a terrible night then rang NHS 111 for advice. A doctor called me back who in turn spoke to the on-call rheumatologist- advised to get antihistamines and call my Consultant on Monday. Typical this happening on a weekend! Apparently it’s not unheard of to have what they call a ‘delayed allergic reaction’. Gutted! Thought I was home and dry. Back to the drawing board. What next I wonder?!!
Oh no! I got the notification and it cut off right after the good news part… I clicked right away to say how happy I was for you…
I’m really sorry this happened! I really hope the next step will work just as well but without any side effects…
Wow! I’ve never heard of a delayed reaction like that. I’m so sorry to hear that. I hope you’re feeling a bit more comfortable with the antihistamines on board
Me too Cynthia! Not sure what my Consultant will suggest next! X
Apparently it’s well documented but I’ve bever seen it before. Between 6 and 12 days following an injection. Still very itchy but don’t feel poorly now xxx
Did you use the auto injector? Delayed reaction is most common with it, generally its not the medication but rather the “latex” involved. Regular injections often don’t have that reaction and frequentlly its a one time tihing if it is the medication.
Yes, it was the humira pen I used, not a syringe. That’s interesting. I’ll see what my Consultant says! Thanks!
OMG that would be great if it’s the latex involved! Since you felt so much better from the injection at first, it would be nice if you could somehow try it again only not with an injector!
Poor you Katie. Let’s hope it’s just the pen thing and they can sort you out with a syringe instead. Big hugs.
I’ve checked with my medical team and the UK pens don’t have any latex, so that seems to rule that out. I’m seeing my Consultant tomorrow - been told not to inject today as planned but wait until I’ve seen him.
I need some answers so will be firing some questions:
POSSIBLE ALLERGIC REACTION TO HUMIRA
Questions:
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As PsA is an autoimmune disease, is it possible that the immune system response is more sensitive to allergens than would normally be experienced by the person prior to the disease becoming active?
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As Humira is an immunosuppressant drug, is it possible that this suppression makes it more likely that the immune system will react to allergens in a more dramatic way than the person would normally experience?
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Would taking antihistamines before and after injecting help stop further reactions?
Any thoughts @tntlamb
I’m sure tntlamb will be along soon, and I’m far from a medical professional, but I’d hazard a guess that;
1 is definitely possible, and I think a few people have had that experience, though it is not widely reported in the literature - check with your Rheumy
2 is counter-intuitive, but not impossible (there have been some really incredible studies of late - mostly not PsA related - that have had some seriously counter-intuitive results)
3 certainly this is a part of the treatment used to minimize any potential reaction to Remicade, so it is worth asking your Rheumy on this for Humira.
Finally, I did mean to respond to this earlier. On Enbrel, my first 6 injections (or so) elicited no reaction except amazing control of my PsA and pain. Though I never had “hives”, on about my 6th injection of Enbrel, I had all-over intense itchiness and red skin, for around 12 hours, with a raised temperature.
I had to sleep in a separate room, because I was so uncomfortable, and only slept for a few hours. I called my Rheumy, but he had never heard of it, and didn’t consider it significant, so I continued the Enbrel.
Prior to that episode, I hadn’t had the slightest site reaction to Enbrel. Afterwards, I used to get a raised welt around the injection site. Over the next four months or so, it slowly reduced, till there was nothing at all.
Given how well the Humira has worked for you, I hope you have a somewhat similar experience. If you are nervous about taking the Humira again, should the reaction get worse (but really want to because it works so well), is there s clinic you could go sit on a bed in the nurses room to self-inject - just to be cautious in case there is a more severe and sudden reaction?
Thank you so much @Jen75, that makes me feel so much better as I was beginning to think it was just me! I’ll explore this further tomorrow. The nurse who supported my first injection says she will come and support me again if I have a 2nd injection, just in case!
Fingers crossed 
I so hope you get some answers Katie. Personally I think with an immune system that’s overactive in odd ways like ours are and with the drugs messing with it trying to stop the bits of it that are paying naughty, anything could make it act out in even more odd ways. Also whilst the UK pens don’t have latex, what else might they have in addition? Latex is only one issue.
So I’d say no 1 is defintely possible. No 2 is too for the same reasons and no 3 absolutely.
Best of luck for tomorrow.
Thank you! It’s great to have responses like yours so I don’t feel as if I’m totally off my rocker!
My understanding is that the answer would be yes yes and yes. Interestingly since I’ve been on a disease modifying med I am much less likely to get poison ivy every year.
Here’s an update for info:
ERELZI/ETANERCEPT/ENBREL
Wednesday 28th March 2018
Saw Biologics Specialist Nurse and my Consultant at the Freeman. They were shocked at how bad the reaction was that I’d experienced to Humira. Consultant said we couldn’t risk me having another injection as my immune system was now sensitised to it and the next reaction could be more severe, possibly anaphylactic. Humira stopped therefore, due to severe allergic reaction! Don’t know if it’s the drug or the preservative but can’t take any chances.
Now being put on a bio-similar to Etanercept (Enbrel) to start within two or three weeks. Advised to keep taking antihistamines for a few weeks. What a journey!
Good luck, Kath!!! I’m crossing my fingers for you!
Thank you! Things have just got to get better!! X
Yes very best of luck. You didn’t need this too did you? x
Good luck!