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Remicade questions

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Ulcerative Colitis
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Posted 8/22/2007 5:15 PM (GMT 0)
Hi Everyone,

 

I got my last results back from my Imuran blood work. My doctor said I can

move onto Remicade. I have been in a flare goodness for a yr or so

with only a few slight remissions. Its been horrible.

Is remicade my last resort before surgery? Also, Do you go to your

doctors to get the shot or do you get it at the pharmacy and do it

yourself?

Also, will I have to take my colozal? That doesn't even work for me anymore.

I am scared of remicade thats all. New drug new beginning you know. eyes

Thanks so much again for your help on this.

Posted 8/22/2007 5:36 PM (GMT 0)
I am new to Remicade, but this is what I have been told and my experience. Remicade is done by infusion. You need to go to a place (hospital, OP clinic, sometimes your MD office if big enough) where you get the infusion. The first one usually takes about 3 hours, and if no problems, the future ones can go faster, but expect 2-2.5 hours. Remicade is usually the top of the line before considering surgery, but sometimes Remicade is adjusted. For example, I am on Remicade and Imuran. If I get off the prednisone the doctor may eventually take me off the Remicade to see if I can maintain remission just on Imuran. On the other hand, even with the Remicade, if I cannot get off the prednisone without problems, then the next step is to consider surgery. There are new meds down the road within the next five years, from what I hear, but Remicade is still the big one for now. There is also Humira. That one is a self injection, but still waiting approval for UC so not always approved by HMOs. I am sure that there are tohers with more experience and info with Remicade, but this is my limited understanding.

Posted 8/22/2007 11:59 PM (GMT 0)
Thank you so much Glenn for all the information. It put me at ease a bit. :-)
Posted 8/23/2007 11:31 AM (GMT 0)
I just had my second Remicade infusion and it's really made a difference. I think my GI had me wait too long between my first & second though, this one is taking a bit longer to "kick in."

I haven't been able to successfully from Prednisone and had been in flare for over a year. I am now down to alternating 10 mg and 5 mg on alternating days for the Pred. I am going to give this another week or so, my symptoms improve each day, and then continue the taper and hopefully get off of it.

I go to an infusion clinic at a hospital about 15 minutes from my house. They are open 7 days a week and if you are there at meal times they even offer you some crappy hospital food. I just bring a book or watch the TV they have and the time goes by reasonably well. The infusion clinic is where they also do chemo, so you're reminded that things can be so much worse.

I hope the Remicade works for you! It's been very helpful to a lot of people.

Meesh

Posted 8/23/2007 8:44 PM (GMT 0)

i also had my first infusion last week and am so happy that the bleeding has finally stopped.  i have been in a flare and on prednisone and 6-mp for almost a year now and was really hoping the remicade would work for me.  hopefully it will work well for you too! 

make sure you ask about the remi-start program if you have a big co-pay.  they cover almost everyone, but you have to apply before your first treatment.

Posted 8/23/2007 11:51 PM (GMT 0)
I am going for my 2nd remicade in 1 hour time ... The first one has shown positive result after 1.5 years of flare...

My GI advised me to continue Imuran ....but what about the other med like Salofalk ? Do we hv 2 continue after remicade ?

Posted 8/24/2007 12:51 PM (GMT 0)
i just had my second infusion this week. I have to say it is my special miracle drug. i have not had any bleeding since the 2nd day after my first infusion. i went from 7-10 bms a day to maybe 2 or 3. It has been wonderful. the only side effects i see are fatigue, slight fever. I only had fever after my first infusion. I am also in a constant state of sinus junk. However i took 6mp for a year or so and i had the same result with that. They both depress your immune system. my best advice is stay away from anyone sick, even if it is just a cold. My infusion nurse said the first 3 days after the infusion are the most crucial (as far as staying away from anyone that is sick) and the week after is pretty important too. The further out you get from the infusion the stronger your immune system is.

My doctor and i have never discussed surgery. i have been flared since 04 with the exception of a few months here and there. None of the other drugs or drug combinations is working so she pulled me off everything except for Asacol and put me on Remicade. Just becuase you aer on remicade does not mean surgery is the next step. You would want to really have a heart to heart with your doc on that one.
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