Nervous about taking Remicade...

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 12:42 PM (GMT -7)   
Hi,
I am getting ready to start infusions..very soon..but I am getting nervous..their is a part of me that feels..that having a fistula and a small seton inside...of me isn't that bad..and its not going to threaten my life...in fact over time..couldn't my body one day just heal on its own and push out the seton? Especially if i have little to no drainage...wouldn't that mean maybe its drying up...everyone is pushing Remicade..but i have Lupus already...and its seems that be an issue...and also my husband has dormant TB...and i am sched to have my test tomorrow...could this pose an issue for me getting Remicade? I am trying to weigh out the pros and cons..yes..i would love to get rid of this thing..but what type of a risk am I really taking...talking to my Colon Rectal Surgeon..he is pushy for Remicade..where my GI is slightly hesistant...i mean..i could have a serious side effect...i could die...or get some horrible infection...so how do i figure this out...something inside of me..is saying...just say no...?

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa -Remicade in process

 


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 12:47 PM (GMT -7)   
I have already taken...Imuran...and it did nothing for like five years...

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa -Remicade in process

 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/2/2009 1:23 PM (GMT -7)   
Hi. I think dormant TB is a concern, but it can and should be treated. There's a 5-10% chance of re-activation, and TB becoming active in the course of your husband's life. I think it's best to get it treated - that'll be the safest for both you and for him - even without remicade.

However, I think you having lupus is a bigger problem when it comes to taking remicade. I think remicade is contraindicated in patients with pre-existing lupus. I am not 100% certain about this, so I could be wrong. Perhaps other folks on the board will know for sure.

Remicade has been a life safer for my husband, and though the risks are scary, so far, knock on wood, it's been a godsend to my husband. I hope you find a med that works for you.

PV

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2009 3:50 PM (GMT -7)   

Hi frogelita, I completely sympathise, I am in the same boat with this fistula…… but I just have to have confidence in my surgeon and GI, I know they are the leaders in their field in this disease, so I am confident they know what they are doing….. it is sooo scary though, I hear about all of these side-effects of remi and I freak out…… but I figure I will start it and see how it works for me. If I get the side-effects I will just have to explain to my GI that I am not happy and want something else. I think we just have to try and take it one day at a time. But it is scary. I am having the same thoughts as you. I’ve had the TB test and it came back all clear so that’s all good I just hope this remi is a lifesaver for me as it has been for others, although as my GI says, there is always the risk that sooner or later your body will build up a resistance to it. hopefully I qualify for it and it works, and the same for you…… let us know when your first infusion is (when you find out) so we can keep tabs on you!!


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 7:38 PM (GMT -7)   
i know Phoebe..you are right..i should trust in them..i will let you know what happens..i still wish if i could..i would give my Remicade to you

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa -Remicade in process

 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2009 9:52 PM (GMT -7)   
you are the sweetest, Frogelina :)
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