6 months in, no remission. Remicade time.

[jacktin]

Hi All,

So, it has now been 6 months since this crazy train of Crohn's Granulomatous Colitis started for me.

Since then, I have been on Asacol (4800 mg a day), Dexilant, Prednisone taper, Imuran 100 mg and some Hyomax and Bentyl for cramping (amongst the other 18 meds I take a day). After a couple of months, no symptom relief and no improvements in blood work AT ALL despite all meds, we are now moving to what my GI calls the "big guns".

Because my inflammation and ulceration is still so bad, my GI is now rushing to put me on Remicade within the week. I had to hurry and get more blood work and a Chest X ray today expedited.

I am grateful she is treating me quickly and aggressively, but I have to admit I am very nervous and a bit scared about Remicade. What should I expect? What is the first infusion like? Will it make me ill?

I desperately want remission, but this drug seems pretty scary :/. I am willing to do it because I am so tired of being sooooo sick, in pain, using the bathroom 15 times a day and exhausted all the time.

What is your experiences? Did you go into remission? How long did it take? How long did you do Remicade infusions for? How long did you stay in remission?

Thanks for all your insight

 

[FrozenGirl]

The first infusion is easy, some paperwork then you go through a standard list of questions (are you sick, fever etc. Have you had or planning vaccines soon, have you been in the hospital, traveled) find a vein, run a bit of saline to make sure its a good one then start then infusion. Infusion is about 2 hours plus a waiting period after to watch for reactions (mine was an hour). Once you are infusing it is actually pretty relaxing, I do mine at a center with comfy chairs, TV and snacks. As for remission, I'm not sure yet. The induction period (first 3 doses); did nothing for me but number 4 has been great, a few symptoms are returning so we are doing every 4 weeks for a bit to see if I can avoid further symptom progression.

I hope it works for you!

 

[Patricia56]

My son had remarkable improvement within 3 days of his first treatment. It took until the 2nd infusion after the loading doses for him to become symptom free. But we had to go to every 4 weeks to get that.

The infusions are easy - just get an IV and sit back and relax for a couple hours.

The risks of Remicade are very small compared to the risks of uncontrolled disease - as you well know. Of course, there are a few rare folks who have reactions to the med but long term there seem to be no substantial side effects including no increased risk of cancer.

Hope it goes well for you.

 

[afidz]

I haven't been on Remicade so I can't tell you anything about that but I wanted to let you know that I am around if you want to talk. I am sure everything will go fine and you can start to feel better!

 

[Nancye50]

I'm on Humira, not remicade, but I was progressing quickly too. I was afraid of the drugs at first too but realized they're totally worth it. I try to think of it as they're making me stronger and healthier.