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Remicade tomorrow!!

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Ulcerative Colitis
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Posted 9/9/2008 10:34 PM (GMT 0)
Well, I just received a phone call from the VA, and the lady said:

"Hi Sean, this is Jeane from the VA, and I hear we need to schedule you for an infusion.. so.. lets see when.."

"Tomorrow?" I blurted out cutting her off. "I am free tomorrow or will be :D"

"Well.."

"I know, I am sorry, I was half kidding I am just anxious.. " and I chuckled.

SHe chuckeld also and said "Well, I was gonna say tomorrow morning is no good, but what about 11 AM?"

"Are you serious? Yes!"

SO, I will be spending time tomorrow getting to know the staff at the infusion clinic and asking questions, having a few pre-labs done, and then my first 400mg infusion. If I am lucky, since the VA agreed to do it (at the request of my non-VA GI), then it will cost me nothing since I already have the paper in hand that establishes service connection..

if I am unlucky, I will get stuck with the 3200$ copay. Either way, I am going in to do it tomorrow. Please wish me luck! And thanks to all of you who have so graciously talked about your Remicade experiences!
Posted 9/9/2008 10:44 PM (GMT 0)
Good luck Sean!

P.S. eligibility might be able to help you with the copay question.  But you have to go there first before you get it, and that might take a bit.  Are you assigned a team yet?  Do you mind if I ask what VA?  I did take my infusions in the oncology area.

If you have any questions please email me at [email protected]

Posted 9/9/2008 10:47 PM (GMT 0)
Being new to this forum I don't know what this Remicade infusion is - I will have to look it up when I have time, but anyway sweetie I wish you the best! I can tell your very excited so I am excited for you and I will put you in my prayers that everything goes well!

Gigi1227
Canasa
Asacol
Psyllium
Multi Enzyme
Mega Probiotic
Posted 9/9/2008 11:32 PM (GMT 0)
I had my regular infusion yesterday. We're moving across the country next week, so it was my last time at my infusion center. I hope the staff at the new one is as great as the ones here!

Hope it works as well for you as it has for me.
Posted 9/9/2008 11:54 PM (GMT 0)
Goodluck!!!
Posted 9/10/2008 12:02 AM (GMT 0)
Best of luck to you! Remi has been heaven sent for me. Make sure to bring a good book or movie, or something to do....I even consider it my "nap" time. Let us know how things go!
Posted 9/10/2008 12:39 AM (GMT 0)
I wish it were that great for me :( it was at first but now after 2 weeks its effects fade
Posted 9/10/2008 12:59 AM (GMT 0)
Good luck! I call it "naptime" as well.
Posted 9/10/2008 1:35 AM (GMT 0)
Thanks guys. I dunno what I will do - perhaps bring my laptop and watch a movie. I have a ton of books that I haven't read. Or maybe just naptime as you say. I am really anxious though. I hope I don't spike again just do to anxiety!!
Posted 9/10/2008 2:29 AM (GMT 0)
Sometimes its hard to stay awake because of the premeds they give you
Posted 9/10/2008 2:39 AM (GMT 0)
Ah yes, she mentioned benadryl I think. And something else.
Posted 9/10/2008 2:46 AM (GMT 0)
Best of luck! Let us know how it goes.
Posted 9/10/2008 3:01 AM (GMT 0)
Good Luck to you
Posted 9/10/2008 1:17 PM (GMT 0)
Remicade was my miricle drug. :) I started feeling better within days! I go in for my third infusion (I guess it's still considered phase one since I had one 5 weeks ago and another 3 weeks ago). I call it my quality reading time. :)

I wish you the best of luck!!
Posted 9/10/2008 1:22 PM (GMT 0)
Lucky; if they give you Benedryl and you still feel really drowsy the next day, ask them to give you Claritin or Zyrtec the next time. I liked taking the Benedryl when I was there for a few hours so I could really get in a great nap, but now that my infusion time has been cut to 1 1/2 hours, I prefer to take the Claritin as I'm not too drowsy to drive home. Again...wishing you well! 

Posted 9/10/2008 9:37 PM (GMT 0)
Wel, I went to the VA hospital today, but I did not receive my remicade. After much bloodwork and scantering around (and I it was a good thing, for once, that my symptoms were in full swing this week and I had to get up twice before I had the IV inserted and the remicade mixed..), the nurse had an epiphany: "Wait wait, I don't see a TB test in your records." SUre enough, I haven't had on in a year. SO they gave me a TB shot, to be read on Friday when I will receive my first treatment.

It's a good thing, from a health-conscious standpoint, because I do not want to know that I received remicade and was at some point exposed to TB after returning from Afghanistan. SO I was all for waiting another two days.

However, it has sparked an immediate depression, coupled with the fact that I am missing work all this week due to my symptoms and things are falling through at the office.

I actually wish they would just go ahead and retire me already, instead of waiting the next 6-12 months for that to come to fruition. At least then, I can begin planning a different lifestyle. It does not help to know that the organization I work for and the job I do is overly stressful - I honestly could do without. If I can get them to retire me then I can relax a bit, continue with my nightschool, and look for another profession that I can work around my own schedule with my pension. But perhaps that is wishful thinking, or at least that it would come so soon.

But digressing, ya, hit hard with depression today. I guess it's a good thing we all didn't get sucked into a black hole this morning when CERN activated its new Large Hadron Collider!
Posted 9/10/2008 11:08 PM (GMT 0)
Sorry, Sean. Yes, it's very important to have that TB skin test. I'm getting ready to move, so will have to change doctors and infusion centers. Along with my other records, I made sure I got a copy of the skin test report so that won't hold things up for me
Posted 9/10/2008 11:54 PM (GMT 0)

I think this was a very lucky thing for you, and enormous thanks to that nurse who was watching out for you! 

Holy mackeral, can you imagine if you had a TB complication on top of the UC? 

You've got a fantastic attitude, it comes through your posts, and anyone who calls themselves Lucky777 I doubt can stay too long in that glass half empty place.  Any reason why you still can't explore alternative jobs while you're stuck on the wait list?

And as you said, you didn't get sucked into the hole.  Me neither, far as I know.      

Posted 9/11/2008 2:48 AM (GMT 0)
Judy and Potato, thanks much.

I hope your move goes well Judy, those can be a pain in the ass, I know.

And I hope you are right potato. Sometimes I think everyone can be a glass half empty type of person. I think I'll get over it like most of us do over a brief period of time. And yes, I can't explore while I am full time employed - not really anyway. When I am able to work (not under this recent spike) I deal with my symptoms and do 50 hours of work at my office and about 30 hours a week at night school as it is.

There's just no time. If I get retired, I can just finish a degree and pursue a part time career only needing half the money. Now that, that would be something to smile about. Heh.
Posted 9/12/2008 9:57 PM (GMT 0)
Well, that was kinda easy and relatively.. painless.

They did hit me with the IV Benadryl - that stuff hits fast and hard. I slept for most of the 3 hours I was in the room. I woke up a few times and just caught mumblings of "nurse gossip".

I really hope this does something for me. I would love to have my life back.
Posted 9/13/2008 3:59 AM (GMT 0)
Good luck. Hope it helps you.
Posted 9/14/2008 1:01 AM (GMT 0)
lucky777

remicade has been a wonderful drug for me and I hope the best for you as well. I am currently getting the remicade every six weeks. It may take a while to get into your blood stream but once it does it is a huge relief off of your shoulders. If you have any other concerns I would be willing to tell you what I have experienced this past year with the remicade infusions. It is always nice to know what other people experience during there infusions.
Posted 9/14/2008 3:50 AM (GMT 0)
Oh man, the IV Benadryl knocked me out in 3 seconds! I hope Remicade starts working quickly for you. I'm getting my 4th infusion Wednesday and my body knows it--the last couple days have been horrible.
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