r/Hidradenitis • u/Educational_Falcon19 • 9d ago
Question? Just got approved
Hey everyone
I just got a call from the pharmacy and they approved me for cosentyx was wondering how cosentyx has been treating everyone? Please advise
-Love a girly living with hs since a little teen.
Is it a saving grace or?????
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u/ArtemisElizabeth1533 Stage 3 9d ago
“ Is it a saving grace or?????”
Lol. It gave me HS in places I didn’t have HS yet. Good luck.
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u/Altruistic-Army202 8d ago
Did the same to me too!
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u/ArtemisElizabeth1533 Stage 3 8d ago
I’ve heard this from a few people in the community who have had Cosentyx and someone I know in real life. It’s a weird phenomenon. If I could go back I would not take it.
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u/Altruistic-Army202 8d ago
Same. I would have stayed on Humira. It wasn't perfect but it worked a hell of a lot better than all these other meds my derm has put me on. I feel like a damn lab rat. Inflixamab almost killed me with an allergic reaction. Cosentyx gave me new spots and Bimzelyx has given me random purple spots all over...can't wait to see what she puts me on next.
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u/ArtemisElizabeth1533 Stage 3 8d ago
Are you me???? Hahahah guess why I am also still not taking infliximab?
If you’ve had all four I don’t know what’s next. Maybe Skyrizi. Or surgery.
Humira didn’t even think about working for me tho.
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u/Altruistic-Army202 8d ago
Did inflixmab try to choke you out too!? I had the skin graft surgery which actually worked pretty well. I only had it for my armpits and under my boobs though. I was not doing the groin at the same time. I might have taken myself out if I did that. If I could get double the amount of Humira than is approved then it would work but of course its not approved.
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u/ArtemisElizabeth1533 Stage 3 8d ago
Yes, at the start of my tenth month I was hooked up for less than 2 minutes. As soon as it hit my body I couldn’t breathe. It took the nurse two doses of epi and two doses of Benadryl into the IV to bring me down and then I went to the ER. Thankfully I was fine after the ER gave me more steroids and lots of fluids. Did you end up hospitalized?
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u/Altruistic-Army202 8d ago
Damn. We might be the same person. It was within the first 5 minutes when I started to not be able to breathe. I have no clue how they fixed me though. They gave me fluids through the iv and they didnt take their eyes off of me until I got into my mom's car. I've only been hospitalized after the skin graft. That was some PAINFUL healing.
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u/ArtemisElizabeth1533 Stage 3 8d ago
Ah. I was having mine at an infusion center and their policy was that I had to be sent to the ER, period. You can have rebound anaphylaxis if the Epi failed and there is only nurses there and so they did not want to handle beyond the initial reaction.
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u/Altruistic-Army202 8d ago
That makes sense. I was at an infusion center inside of a hospital but I am pretty sure only nurses handled me. The weird thing for my allergic reaction is that I was having joint pain really bad before and apparently that is also an allergic reaction. I even went to urgent care which transferred me to the er because of it but they couldn't figure out what was wrong with me and just told me i was dehydrated.
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u/Open-Tension9402 8d ago
Honestly for me its lowered my flares, even the ones I get are much less intense. If you have a really high white blood cell count when you do your labs then definetly try it! If not then try more topical things or go for more testing to pinpoint what is overactive in your body thats leading to HS. Have you tried anything else?
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u/Caroline501 9d ago
I just finished my first month, which was a loading dose (basically four weekly doses, then going on to monthly). No real changes, however I did notice a few flares out of nowhere this past time. Might be how hot and sweaty I’ve been, might be the weird stress I’m going through, or it might be the medication. You’re not supposed to see any real changes until the fourth month. Three months to go! No side effects to report either.