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#359443 10/01/09 08:04 AM
Joined: Mar 2009
Posts: 185
rob77 Offline OP
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HeyHey.
well..... Humira isn't looking any better than Enbrel for me.... exact same allergic reaction has started up a week and a half after 1 shot. Itchy all over, big headache, skin gone wierd and lips swelling plus feel like crap. Am I being a wuss with this? Is this the trade off for better AS control?.. The most annoying thing is that I respond positive too and it works really well on my AS. Going to hospital tomorrow to see rheumy and allergy specialist.... dunno whats gonna happen. Maybe throw benadryl or prednisone in there to contol the allergic reaction??... Anyone else have similar intolerance to tnf's? Rob

rob77 #359444 10/01/09 09:17 AM
Joined: Apr 2002
Posts: 12,465
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mig Offline
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Oh Rob, no, you are not being a wuss at all! It does sound like an allergic reaction unfortunately and concerning enough (imo) that I wouldn't want to try to tough through it. Lip swelling is not a good sign. Benadryl may help but you are wise to seek the professional advice from your docs. I suppose you have ruled out a latex allergy?

I had a small short 'adverse reaction' to Remicade after my very first infusion (it made me feel green ) that was solved with a bit of Benadryl and with no problem at all since. I've not been on Enbrel or Humira so my experience is limited.

I am so sorry you've had such rotten luck with 2 biologics. It must be especially disappointing when you've noticed some positive improvement already too. I will be interested to read what your docs advise.

Take good care,
mig

mig #359445 10/01/09 10:18 AM
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Posts: 185
rob77 Offline OP
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Thanks Mig...
I'm at the end of my tether at 32. Really OVER
it!! Remicade's next on the list... Think i've had enough biologic adventures for this year though. If they pull the plug tomorrow I just want back on nsaids and my new best friend ... endone (oxycodone)... It gives me more relief than anything..... Is that (oxy) a bad thing? People call it hillbilly heroin down here..anyways ..
cheers Mig ; )

rob77 #359446 10/01/09 03:57 PM
Joined: Apr 2009
Posts: 1,576
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Oh crap my friend. I am so sorry. That really stinks!! And you're rocking the botox look too?? You've had quite the roller coaster year, with too many "ooooooooooooh's" and not enough "ahhhhhhhhh's"

My heart is sad and heavy for ya, pal. Maybe you just need to come and sit in a mine in Montana with me for a couple of days. OK, in any other circles that last sentence would be total crazy acid talk. But not here, where we do anything and everything to just feel better.

By the way the oxy is awesome for me too. For about 6 hours I can forget I ever knew the AS-monster!!! It's sweet.

The only bad thing I have heard of is that obviously it's addictive, and I also wonder if I would build up a tolerance to it, which would totally tank.

But for now, you rock your hillbilly heroin, I'm behind you 100%.

-D

rob77 #359447 10/01/09 07:57 PM
Joined: Apr 2002
Posts: 12,465
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mig Offline
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Yep, I know what that's like Rob, I was at the end of my tether at 28 but somehow we manage to carry on and next thing ya know, years have slipped by.

To take a break from these adventures and do what works for you is not a bad thing at all; it's sounds like a good plan to me! Long term you'll need to look for a solution or combo that offers more than a mask and gives you hope of slowing disease progression... but we all need a break sometimes. Even on remi, I still rely on daily nsaids. It is a stupid rotten disease, so take whatever measures permit you to enjoy some quality of life.. we can lose out on a lot of living by waiting for tomorrow.

Cheers back!
mig

mig #359448 10/02/09 01:22 AM
Joined: Mar 2009
Posts: 185
rob77 Offline OP
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Enbrel FAIL. Humira FAIL.

mig #359449 10/02/09 01:25 AM
Joined: Mar 2009
Posts: 185
rob77 Offline OP
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Okay.. they canned humira today. Seem's there's something in my blood some antibody that doesn't like this tnf buisness.
Talked about remicade plus something to control antibody. Sounds complicated and dodgey though. The doctors are at a loss... I'm at a loss... haven't been on SSZ or any dmards yet though. Rob

rob77 #359450 10/02/09 03:43 AM
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Interesting, I'm taking notes.

rob77 #359451 10/02/09 03:47 AM
Joined: Nov 2007
Posts: 6,269
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I'm so sorry to hear this Rob...I hope you find something that will help and that your body can tolerate...


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Mar 2009
Posts: 185
rob77 Offline OP
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Thanks, D and Michelle. I'll be tolerating some whiskey tonight i think. cheers.

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