Remicade tomorrow!!

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Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 4:34 PM (GMT -6)   
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!
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/9/2008 4:44 PM (GMT -6)   
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 MMMNAVY@healingwell.com
 
 


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 9/9/2008 7:10:01 PM (GMT-6)


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 9/9/2008 4:47 PM (GMT -6)   
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

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/9/2008 5:32 PM (GMT -6)   
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.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/9/2008 5:54 PM (GMT -6)   
Goodluck!!!

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/9/2008 6:02 PM (GMT -6)   
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!
Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/9/2008 6:39 PM (GMT -6)   
I wish it were that great for me :( it was at first but now after 2 weeks its effects fade

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/9/2008 6:59 PM (GMT -6)   
Good luck! I call it "naptime" as well.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 7:35 PM (GMT -6)   
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!!
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/9/2008 8:29 PM (GMT -6)   
Sometimes its hard to stay awake because of the premeds they give you

Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 8:39 PM (GMT -6)   
Ah yes, she mentioned benadryl I think. And something else.
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4172
   Posted 9/9/2008 8:46 PM (GMT -6)   
Best of luck! Let us know how it goes.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa nightly; Canasa weekly; Viactiv; Metamucil wafers; multivitamin


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 9/9/2008 9:01 PM (GMT -6)   
Good Luck to you
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 9/10/2008 7:17 AM (GMT -6)   
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!!
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (full colitis)
Medications: Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone (weening, down to 10mg/day); Protonix (until I'm done with prednisone); Remicade infusions (started Aug 2008 - 2 infusions so far, one more to go in 2 weeks prior to starting them every 8 weeks); Zyrtec-D (for allergies)
Supplements: Women's One-a-day multi-vitamin; Super B-xomplex w/vitamin C


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/10/2008 7:22 AM (GMT -6)   
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! 

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/10/2008 3:37 PM (GMT -6)   
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!
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/10/2008 5:08 PM (GMT -6)   
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
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 9/10/2008 5:54 PM (GMT -6)   

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.      


Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) am & pm rowasa every other day  culturelle, benefiber wafers  generic acidophilus, metamucil wafers, activia
children's vitamin, Vitamin E 400 mg, omeprazole 2xday
oxazepam when needed, lomotil or ImodiumAD (not in the same day) when needed
 
 
 
 
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/10/2008 8:48 PM (GMT -6)   
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.
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/12/2008 3:57 PM (GMT -6)   
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.
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 9/12/2008 9:59 PM (GMT -6)   
Good luck. Hope it helps you.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


jolly1975
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/13/2008 7:01 PM (GMT -6)   
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.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/13/2008 9:50 PM (GMT -6)   
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.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 

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