Mar-Apr '08 | briefing | mail | interviews | articlespsorchat |  don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewkesearch | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic  | 2008 Ed Dewke

Her Remicade Experience – Chapter Four
from Itchy Flakey in NY

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

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