Me and HUMIRA - thoughts please?

[LouLou]

Hello – I’m LouLou’s (Lou) girlfriend - the one with Crohns – Lou is my research champ – anyhow – this is my first time on the site – I am 34yrs old & was diagnosed with Crohns at 19 but suffered many years prior before the doctor’s figured out what was going on – ANYHOW – I have been through rounds of different drugs over the years and recently started Humira (approximately 8-9 weeks ago) – I should probably mention that a few months prior to Humira they tried me on Remicade – after 1st infusion I started suffering with a rash, then flew like symptoms and then eventually – my entire body seized (paralyzed) excruciating pain – hospital – pain killers (morphine, percs, etc.) did nothing eventually – they contacted my G.I. specialist who advised them I need steroids (only thing that would help) – anyhow I never went for a second injection – I should also mention that I was part of a trial study for Remicade approx. 8 years ago (no problem then) – they think that maybe my body built an immunity to the drug over time & hence the bad reaction – ANYHOW – I am not having the best of luck with the Humira – noticed a rash right away (1st week) dermatitis/eczema like rashes on my face (which has been constant) & rashes on & off on my legs – then I started getting headaches & nausea on & off (this is not constant but frequent) – then I also started experiencing flu like symptoms – aches pains – also several kidney/bladder infections (peeing all night long every hour at least) - & serious insomnia – the insomnia literally reeking havoc in my life – anyhow I have been off work for a week & am waiting to see a new G.I. specialist April 30 – I am taking sleep aids (which I was stubborn & fought doing) but then delusional desperation hit – NOW BELIEVE IT OR NOT I AM POSITIVE AND DETERMINED THIS WILL ALL PASS ONCE I & DOCTORS FIGURE THINGS OUT – long long storey short – just wanted to know if anyhow has experienced anything similar on HUMIRA.? Simply put…do you think my symptoms described above are related to Humira use? Thoughts please – sorry about the blabbing!

 

[My Butt Hurts]

Hi Lou Lou.
I am also on Humira, in my 7th week, and it has been the best experience for me so far since diagnosis in 2002. I have no symptoms at all that you described, and I feel great. They still could be from the Humira for you though. It's so hard to tell. Remember that everyone's Crohn's symptoms are different, and so is everyone's reactions to the medications. Humira doesn't even work for some people. I did actually just get a rash on my legs the other day, but I believe it's just another "fun" symptom of Crohn's called erythma nodosum, not from the Humira.
Any time I feel a bladder infection coming on, I drink a ton of cranberry juice, and it always goes away within a day - if that helps.
Sounds like you're having a rough time of it. Good luck, and I hope everything sorts out soon.