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Crohn's Disease
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Posted 11/25/2008 3:10 AM (GMT 0)
Hi, just wanted to know when you go for your brain scan?

Please be sure to let us know... Thinking of you.
Posted 11/25/2008 4:37 AM (GMT 0)
Vicky - Thank you so much for asking and thinking of me! I tend to not post all my trials and tribulations because then I must think of them. Denial is good sometimes, especially when I'm waiting for important tests. I'm going for the brain scan a week from Wednesday, on the 3rd of December. I won't see the doctor until December 11th for the results. Being impatient I tend to go get the reports prior to seeing the doctor but I don't know if I will this time. I admit I am a bit freaked out over the possibilities of the results.

Since you posted to me, I'll use this opportunity to ask you something. Do you think that those of us that have developed lupus after using Remicade and/or Humira should be more vocal about what has happened to us? I am beginning to believe that Remicade induced lupus is a bigger problem than has been reported. I got really positive gut response to Remicade and it definitely helped my joints ~~ but at what price now? I am also concerned that it I am too vocal it might alarm someone to an extent they don't take Remicade when it might help them.

I have some papers from the manufacturer sent to my doctor at the time of my lupus diagnosis . The reports totally downplay the possibility of full blown lupus as a result of Remicade. Perhaps after the holidays when I have more time, I will take a survey and see how many here have lupus after the anti-TNFs. At that time I can share the manufacturer's response to my GI's inquiry.

Enough rambling - again, thank you for thinking of me. I'll be sure to let everyone know about my brain MRI - pray they find that I do have a brain!
Posted 11/25/2008 4:44 AM (GMT 0)
Ides, I think it is a good idea... After all there will be more like us. I will pray for a good result for you. God Bless.
Posted 11/25/2008 11:15 AM (GMT 0)
Ides -- good luck on your scan, I'll be thinking of you.
Posted 11/25/2008 11:59 AM (GMT 0)
Good luck. I will keep you in my thoughts. And, yes, I do believe this news should be reported. This is important. When my PCP told me he did not want to put me on any of the "stronger" meds to manage my symptoms due to the "things they cause," I didn't know what he meant; however, I am starting to see why he is so protective.

-Leslie
Posted 11/25/2008 12:01 PM (GMT 0)
Anyone who can help,

I am new to this (talking online with people).  My daughter was diagnosed with Crohn's in Feb. 07. She is 16. 

fightingcrohn's

**moved your post to a thread of its own so you will get answers to your questions**

I titled it

                  New Member.......Mom of 16 Year Old Needing Answers 

             

You can change the title if you want too ....

LYN

Post Edited By Moderator (Howlyncat) : 11/25/2008 5:42:28 AM (GMT-7)

Posted 11/25/2008 2:08 PM (GMT 0)
Good luck Ides.
As to those of us who developed lupus after remi...humm I wonder if it just made us more susceptible to the autoimmune cascade. But Remicade actually really never helped me. The only think that did was injectable MTX.
Posted 11/25/2008 5:07 PM (GMT 0)
Ideas, My prayers and best wishes.

teddybear
Posted 11/25/2008 5:29 PM (GMT 0)
Hi Ides Wishing you all the best on your scan. I certainly feel that a thread on it would be interesting and as for now perhaps just try to unwind. I know it is hard at times waiting testing .lol gail
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