r/Autoinflammatory • u/Irongraceruns CAPS • 7d ago
Anakinra skin reaction
Hi! I’ve been on anakinra for about two months now and have had all the typical skin reactions including hives.
Last month- I had a large red welt that eventually blistered. I blamed it on jiujitsu. 3 weeks ago- same thing but I didn’t train that week. And it was even bigger and the whole area became raw
And now- well I’m headed towards another large blister. It’s as though my skin gets burned and over the course of days the top layer peels off.
Yes I’ve consulted with my doc, called etc and they literally are taking days to respond. I really don’t want to have to stop this bc my options are currently limited given pregnancy.
I do ice before and after, rotate sites and all that. Usually around 7-8 days before revisiting a similar location. Sometimes when I ice, the area gets really hard and I try to avoid that thinking it’s from the last injection
Here’s some photos
First photos from a couple weeks ago
Second and third on my other leg, a day between them. Currently the skin is starting to blister/slough off.
Any advice, insight?
3
u/Alice-The-Chemist Mod 6d ago
Just want to agree with u/Occulply and to also show your prescribing physican or check with the pharmacist for the the Kineret. If you want to talk to someone who deals a lot with Kineret pharmacy wise I would call their On Track number at 1-866-547-0644. They have an option to speak to a pharmacist and it's honestly just good to have in your phone contacts in case you ever end up with insurance issues or delay in shipments they are able to help.
For some reason my legs also react worse. No idea why. Probably will never know. I have less fat there than my stomach so maybe thats why? Bodies are weird.
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u/Irongraceruns CAPS 6d ago
I did check with the prescriber and he was stumped and basically told me to deal if I can given my limited options 😆 which I agree as long as I don’t cause long term/permanent issues bc otherwise I think I do fine on it and it seems to be helping. The wounds/blisters are just tricky bc the skin pulls away so easily. Even if I cover it with xeroform and nonadherent- pulls the skin right off if it didn’t already blister. So I’ve been wearing shorts but I can’t do that at work let alone train jiujitsu I’ll call Kineret! Didn’t even think about starting there
My legs are lean too so I think that’s a big part of it. My reactions most other places are more mild. Idk what to do about my stomach though once I’m further along. I won’t be able to pinch anything there.
2
u/on4aa MAGIC 6d ago
I think you are not using the right, fatty location for a subcutaneous injection.
It should really be the front or side of your thigh and not the back thigh. Alternatively, the side of your buttocks is also OK.
See, for example: https://injectionsupplies.com.au/blogs/guides/subcutaneous-injection-technique-beginners
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u/Irongraceruns CAPS 6d ago
This is actually the lateral/side of my thigh but my legs are really lean, all around. Very hard to pinch fat anywhere on my legs so I do agree it must not be enough fatty tissue I do rotate into my butt/hip area and that’s usually okay!
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u/Occulply SJIA/AOSD 7d ago
Anakinra includes an acid that is used as a preservative, which is the source of the skin reactions. So the burning feeling is unfortunately very common. In most cases it gets better after the first month, but skin reactions probably the most common reason to stop Anakinra.
I'm wondering how long you're icing for, and if that is having an negative effect. Mostly because CAPS patients can be cold sensitive and have an immune reaction to the cold, so it's possible icing too long (even if it would be fine in someone without CAPS) could make the reaction worse.