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Remicade time

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Ulcerative Colitis
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Posted 10/11/2011 8:26 PM (GMT 0)
Condensing a few pages worth of writing down to "I had a few really bad days recently." Bit of an understatement but it's all relative here.

Both glad (I felt like I needed to upgrade treatment) and nervous (cost, side effects, hardcore med.)

Taking a deep breath and getting ready to call my GP for a TB test and MMR vaccine (that I know I can't get while on Remi but need before getting pregnant, hopefully next year.)
Posted 10/11/2011 8:51 PM (GMT 0)
Sorry you have not been feeling well, good luck w/remi it has helped me. I hope to get pregnant soon, going to see my Kidney and GI Doc the 2nd week of Nov and hope to get the go ahead's : )

Any questions please let me know!
Posted 10/11/2011 10:26 PM (GMT 0)
I can't think of anything to ask that I know I haven't read elsewhere already, other than "Will it work for me?" Just overwhelmed by the thought of 'am I really that sick?'

Oh here's one, haha. My coworkers are asking me if it'll make me smell... Our boss gets infusions of some kind of homeopathic something-or-other and he comes into the office afterwards smelling like rotten olives. It's quite nauseating when you already feel bad to begin with!
Posted 10/12/2011 1:22 PM (GMT 0)
No, you won't smell! haha!

I've had pretty good luck with Remicade. The negatives are the infusions themselves and the pharmacy (Prescription Solutions) who fills my order (They are a nightmare). Remicade doesn't get me to 100%. Rectal meds help a little bit. I'm trying Wellbutrin now (not just for colitis, I've had depression issues ever since my flare last year).
Posted 10/12/2011 1:43 PM (GMT 0)
I don't think the infusions are so bad.  Just bring a book or laptop and relax for a couple of hours.  I find it to be very de-stressing.  I just completed my 4th remicade infusion and it's just starting to kick in now.  For some people it works right away and for others it takes a while to work.

Also, check out the remistart reimbursement program.  (Google Remistart).  You can save a ton of money by taking advantage of the manufacturer's reimbursement program. 

Posted 10/12/2011 6:31 PM (GMT 0)
I also find the infusions very calming. I get them in my doctor's office "infusion center" in my own small room with a big (albeit vinyl) recliner. I turn off the florescent light overhead and use a table lamp to read by. I haven't priced it but I think the doctor's office or infusion center would be less money than a hospital. I like the privacy because I don't discuss my disease or reveal it to anyone, so I don't want anyone to see me. I have seen the hospital infusion centers and there is no privacy.

Anyway, think positive thoughts! I expected it to work and it did.
Posted 10/12/2011 6:44 PM (GMT 0)
Goodluck Hoshi.
Posted 10/19/2011 12:22 AM (GMT 0)
Well I got the call from my doctor that the insurance authorization went through. Good news, but for some reason I still get all panicky thinking about it - it's not a fear of the Remicade but the scheduling that's going to be involved.

First infusion, then two weeks later, then four weeks later (if I understood the message correctly, she said six weeks from the initial infusion), and then every 8 weeks beyond that.

First I need my TB test which got rescheduled from Thursday to Monday to Wednesday so I'll have my results Friday. I did get my MMR vaccine on Thurs since I read you can't have live vaccines on Remicade, but I didn't realize it was a 2 part one. So I have to wait a month for the next shot, which means waiting a month for the Remicade, if I want to have proof that I got them (needed if I go back to school) since neither of my parents have any idea where my medical records from when I was a kid are.

And Saturday I have a tattoo art consultation and I'd really like to get the actual tattoo in before starting as well. The consultation's already been rescheduled on me twice! But who am I to complain about someone being sick too often?
Posted 10/19/2011 7:32 PM (GMT 0)
I just found out they do infusions on Saturdays so that saves me a huge work scheduling nightmare. I even get to save my sick days for actually being sick.

Now I'm waiting for a call back to see how long I have to wait after my second vaccine to start.
Posted 10/19/2011 7:34 PM (GMT 0)
It sounds like you're trying to fit a lot in before the infusion. How is your UC behaving? I hope well enough that you can wait.
Posted 10/19/2011 10:38 PM (GMT 0)
Well I've been dealing with this for about two years now... what's another month I guess?

Got my TB test today so I can have that checked on Friday, next vaccine scheduled for Nov 11 and start the Remicade on Nov 26. My tattoo guy is already scheduled out into December so that's not happening beforehand but on the other hand I realized, if the Remi works (thinking positive) then I won't have to worry about how I feel come tattoo day.

I just really want this week to be over with mostly. My manager just asked me if I can come in at 7:30 tomorrow and I can't exactly say, "Well actually I'm barely dragging myself out of bed to get here at 9... try taking 20 pills a day and see how you feel about 7:30." And I already told myself no caffeine tomorrow so I keep my stomach happy.

And to keep whining on this further - apparently my former coworker told the client that we're having the meeting with (he's coming in for this, and coming in at 7:30 to give us a 2-hour crash course on what the client's expecting to see) that we know just as much if not more about the system than he does. When in reality, I just jumped and and am being expected to know things he took *months* of working with it to figure out.

This is something I volunteered for (taking over as the new "expert") but before I realized how much stress at work is affecting my health...
Posted 10/31/2011 9:22 AM (GMT 0)
Well it looks like I left off whining about my job. blush

I made it through that week at least. Last week I was getting noticeably sicker, no longer getting a break between bad days, and took some spontaneous vacation time which I'm considering pseudo-medical leave, Friday and tomorrow off for a four day weekend.

I have my second vaccine on the 11th, start Remicade on the 26th, and scheduled my tattoo appointment today for December 18. I've looked around and it doesn't look like anyone's had issues with tattoos while on Remicade.
Posted 10/31/2011 11:59 AM (GMT 0)
Good luck, Hoshi.
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