no remicade for me...

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randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/11/2008 2:58 PM (GMT -7)   
went for my infusion and blood work. no infusion for you young man! not untill some dr approves.. so they are waiting and siupposed to call me wednesday morning and i can get it then if we get th okee dokee.    so we wait...
randynoguts 



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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2008 3:19 PM (GMT -7)   
*sigh* How frustrating. I'm sorry, Randy.

How are you feeling? Can you hold out without it for the next few days?
Co-Moderator Crohn's Forum.


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 8/11/2008 3:26 PM (GMT -7)   
Why did they withhold it Randy?
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/11/2008 3:33 PM (GMT -7)   
O.o you'd think they'd approve of it before-hand, unless they just wanna see the results of your bloods first?
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/11/2008 3:42 PM (GMT -7)   
I wonder why it wasn't approved first? I'm so sorry. Good luck to you! Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 8/11/2008 3:46 PM (GMT -7)   
I'm so sorry to hear that Randy. I sure hope things are straightened up for you soon and you get some 'cade! Were you running a fever or anything?

Bev

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/11/2008 5:47 PM (GMT -7)   
Hi Randy don't know exactly how things got screwed up but hope something gets straigtened up . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 8/11/2008 9:54 PM (GMT -7)   
What!?....The monkeys are released!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/12/2008 2:34 AM (GMT -7)   
no mouse juice cause of the reaction i had 2 weeks ago... trying to get info from a doc at the university about what combo of premees will be best... pred,tylenol and benadryl are the top 3 right now. so seeing as we did not get this info soon enough to do the pred the day before, and the next day to do it is wed. well thats the hang up.. or just put it off till next monday.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/12/2008 2:40 AM (GMT -7)   
Randy, I'm sorry to hear you had a reaction. My GI's protocol for people who have had a reaction is this..... Two Extra-Strength Tylenol 1 hour prior to infusion, Benadryl 1/2 hour prior to infusion, and Decadron (steroid through IV) right before infusion. Then, two more Tylenol when the infusion is finished. The best of luck to you!
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 8/12/2008 10:41 AM (GMT -7)   
I got a bag of Benadryl via IV before my Remicaide bag (actually it was a bottle), BUT...  I hope they get it figured out so you can get some relief!  Keep us posted and stay strong Randy!
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/12/2008 1:19 PM (GMT -7)   
I took 6 months off once so now I get all my pre-meds via IV. Benadryl (50mg, previcid, steroids) sleep through the whole thing. Glad my nurse uses a big vein, benadryl burns in a small one.

Good luck and keep us posted.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/12/2008 4:27 PM (GMT -7)   
thanks for the suggestions everyone.. we will see what transpires
randynoguts 



     http://www.geocities.com/randynogutsweb/


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/12/2008 4:57 PM (GMT -7)   
I hope you are one of the ones that can tolerate Remi with more pre-meds!! Didn't work for me -- after 4 -5 influsions, I flamed out twice on Remi and once on Humira (just one pen). I really feel for you!! After loosing two significant drugs I wonder what else there is. On 6MP now.
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 8/12/2008 8:18 PM (GMT -7)   
Randy- I know this may be off the wall and you may remember about me talking about it here...but the saline flushes they use prior to the Remicade can contain a form of Benzene. I found this was a problem for me because various forms of Benzene were in all Tylenol products except for the pharmacy grade Tylenol in Percocet, Tramadol, etc. Once I had figured out why I could not take OTC Tylenol, I started looking at ingredients in my lotions, shampoos, sodas, etc. I was using a total of 12 products that contain one form or another of Benzene. I cut them out for 2 weeks and ALL of my allergy like symptoms vanished. This was also around the time I was on Remicade. Hey, you are on the waiting list anyway....maybe it's worth a looksee! I also stumbled across some OSHA hazard information that pertains to employees working in a hazardous environment as part of a review I had to do at work. One of the chemicals listed as highly toxic in volitole (spelling?) form and/or absorbed through the skin was guess what...Benzene. My GI thought I was crazy because I couldn't tolerate Tylenol....gonna take the article to her next follow up! As an after thought, forms of Benzene can also be found in SOME injectables. I was able to continue the Remicade treatments without pre-meds after reducing the Benzene products. Unfortunately, I later developed antibodies.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/12/2008 9:01 PM (GMT -7)   
hey broomie, thanks, but actually i get only preservative free saline for that reason, :0).. thanks though.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/13/2008 12:07 PM (GMT -7)   
Randy,

Sorry to hear you are not tolerating this med. I hope they can fix the problem, ASAP. Godspeed my friend.

Sincerely,
Matthew

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/13/2008 12:40 PM (GMT -7)   
Aint this just about right,,always the docs are looking to close the barn door after the horse is out. Thats like ,,OK lets start the operation,,,gee,,anyone have something to cut with???? Hope you can get it soon and it helps Rando...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/13/2008 6:06 PM (GMT -7)   
well i got my call today... no remicade till the monday after next.... soo we go on...
randynoguts 



     http://www.geocities.com/randynogutsweb/


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 8/13/2008 7:37 PM (GMT -7)   
Well at least it's not a total no go! Hang in there! All the thanks be to you! I learned something from you too! I didn't know that preservative free saline existed! I will ALWAYS request it now!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/13/2008 11:27 PM (GMT -7)   
broomie, oh yes, thats all i can have for years now.. they should have it in stock where you go, if not ask for it before hand. so they have it for you. comes in all kinds too, bags,prefilled syringes and bottles for filling your own.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/14/2008 2:36 AM (GMT -7)   
Randy, I'm glad to hear it's still a go and not cancelled completely. Good luck to you!
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 

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