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If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
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Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
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
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Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
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 ; )
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Joined: Apr 2009
Posts: 1,576
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,576 |
 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
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
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
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Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
Enbrel FAIL. Humira FAIL.
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Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
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
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Joined: Apr 2009
Posts: 1,576
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,576 |
Interesting, I'm taking notes. 
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
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
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Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
Thanks, D and Michelle. I'll be tolerating some whiskey tonight i think. cheers. 
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