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Remicade Experience – Chapter Four
Backstory: Her Remicade Experience - Chapter Three
Hi Ed. The Remicade has stopped working. Repeat: The Remicade has stopped working. Total meltdown has ensued. My scalp is covered in psoriasis, I'm having a Crohn's flare, I have an intestinal infection, explosive runs going on the third week, and my joints ache so bad today I feel like someone has thrown me a beating.
I'm on antibiotics and mesalamine and topical for the P, which is not working. I got sick 3 days after my last infusion. My kind employers are allowing me to work remotely but that won't last forever. I'm miserable. Back to the gastro today. I'm not even seeing a derm. There was never any point, my P is a warrior and so far has responded to nothing but the Remicade, which was initially prescribed for Crohn's.
I'm so cranky I had to share this with people who know how much this sucks.
My next Remicade will be a double dose. If that doesn't work they will switch me to Humira.
Is it too good to be true if you were clear for a year? I wouldn't give up that year for anything. I think.
Right now the pain in my neck is so bad, my head hurts from it and I feel like I'm going to throw up.
I have never had this kind of joint pain.
Thank you and have a nice day. -Itchy
Ed’s Response: So sorry to hear about this, Itchy! When/if you get moved to Humira, do ask about single or double dose. Given your recalcitrance, I'd sure like to see them start you on the double dose. This means a WEEKLY subcutaneous injection (normally, Humira is prescribed for injections every OTHER week). The Humira did not do much for me on the every other week regimen. Soon after I started weekly dosing, everything got better pretty quickly.
You mention one more Remicade infusion that will be a double dose. Why are they even DOING this if it makes you so violently ill? I guess once more just to be sure. Huh? -Ed
Itchy’s Response: The Remicade didn't make me sick. I got sick because it didn't work, so they are hoping a double dose next time will have some effectiveness.
I just got back from the gastro[enterologist]. I have C-diff too and need to switch from flagyl to vancomycin [antibiotics]. Fun! –Itchy
*****Ed’s Response: Too bad you can't fire your immune system, Itchy. It sounds like the community of bacteria in your intestines have mounted an insurrection. Please stay in touch and DEFINITELY I want to hear what happens after the next Remicade double-dose. (Thanks for straightening me out about that.) -Ed