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just need to vent!!dont know what next???

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Posted 10/12/2009 11:42 PM (GMT 0)

 i have taken all drugs except remicade, recent had to take my self off imuran after had wisdow teeth removed and mouth wouldnt heal because drug lowers immune system so low.all antibotics i take will cause flare up...been bleeding for months after months.I have had this disease for almost 11 yrs now and it has spread recently and so hard to put back into remission with out heavy duty meds for a while.then the side effects are so brutal.cant figure out diet...just so sick of taken meds with little to no results.so dont know what to try next???

Posted 10/13/2009 12:18 AM (GMT 0)
i hate taking all those meds too man, it sucks!! but each flare up for me gets worse after i quit the meds, gotta suck it up, take the meds and stay on them, it will only get worse if you dont. but after taking everything maybe surgery is your next option.
Posted 10/13/2009 1:02 AM (GMT 0)
How long did you wait for your mouth to heal? I had mine removed and it took quite a while (weeks), I still have sockets/holes goin' on but the actual wounds are closed now. Also, my piercing, it was supposed to take like four months or something and took longer.

I was wondering if anyone else had healing issues.

Anyways, if your mouth is better now, why not go back on the imuran?
Posted 10/14/2009 5:54 PM (GMT 0)
i had to take my self off imuran mouth keep getting infected for 2-3 months after surgery..i am not going back on it i mean what happens if i get seriously hurt and wont be able to heal took prob 2-3 weeks to get out of my system.this last flair up yhe prednisone at 60 mg wasnt helping the imuran helped but coulnt heal my mouth..i am so fed up with this i am purging my body of all meds and going to try some natural stuff i think im bleeding on or off the meds so whats the difference
Posted 10/14/2009 8:09 PM (GMT 0)
     Is there a reason why you didn't try Remicade?
Posted 10/14/2009 8:12 PM (GMT 0)
Can you give Remicade a try? Maybe you get out of your misery.
Posted 10/16/2009 1:50 PM (GMT 0)
i have heard some horror stories about reactions to remicade. i am one of those people with bad
luck
Posted 10/16/2009 2:24 PM (GMT 0)
     I don't think luck has anything to do with this disease.  If I didn't test positive on a TB skin patch test 40 yrs ago, I would try Remicade myself, but I was told I am not a candidate for it..too risky for me.
Posted 10/16/2009 11:01 PM (GMT 0)
If you don't think it will work, it probably won't. I believe more in positive thinking than in luck!
People think I'm lucky...because they don't know everything.
Posted 10/16/2009 11:34 PM (GMT 0)
I finally tried Remicade this past Wednesday after years of avoiding it, and you know what? It was nothing at all. No heart palpitations. No throat closure. No itchy skin nothing. I don't see any results yet but it's only the first dose.

All I can say is I died 1.000 deaths worrying about nothing and if it wasn't for the positive people on this site pushing me along, I never would have gone.

Please consider giving it a shot, you've got nothing to lose...
Posted 10/17/2009 1:23 AM (GMT 0)

I do believe that thinking something will work is 1/2 the battle - at least.  My husband who has lung cancer - did radiation and chemo and always knew it was working.  He has been in remission for almost 2.5 years.  It was rough at times but he visualized the cancer leaving his body and his feeling great and it worked.

ElaineNY

Posted 10/17/2009 1:45 PM (GMT 0)
So, when u try Remicade and you have a bad reaction to it, then you can try Humira. I did that. Now I'm doing Great!
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