The good news didn't last long!!

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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 12/11/2007 12:45 PM (GMT -7)   
Hi everyone, boy I'm glad you guy's can't see me right now. I've been bawling during and after the visit with the specialist.
Firstly I DO have pancreatitis. It's the terminology used for a pancreas that is scared up. However, I do have borderline function,
so no need at this time for enzymes, just painkillers for the pain that I'm getting from the scaring, or at least that's what he said.
The nerves react to scaring and produce pain.
Secondly all the biopsies taken, came back as active crohns. The doc is very uncertain how far into the illeum the disease goes,
so surgery is not viable right now, as he's concerned he might have to remove too much.
So he wants me to take pred & humira, and for those who know me, you know how scared I am about that, following my anaphylactic
shock episode with remicade.
What should I expect from humira? Should I be concerned?
I'm sorry guys, I can't write no more, I'm totally devastated. LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 12/11/2007 12:56 PM (GMT -7)   
First sending hugs!!!  The way that my GI explained it to me is this,well,something like this,the Remicade is made of mouse protein,and Humira isn't,so the chance for such a bad reaction is minimum,however,you can get the localized reactions,rash,redness... I find that my nose/sinuses burn and get stuffy so I just use drops,which really helps.As far as the injection,it burns alot,BUT I find that if I ice the area and bring the Humira to room temp,it helps tremendously!!!  Hang in there :-)

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/11/2007 1:07 PM (GMT -7)   
Ah Vicky,

I'm so sorry. I was worried he'd say something like that about your pancrease. There's usually a reason for the scaring. Maybe it was caused by the Remicade and it will stop now, I wonder if it can heal at all like the liver?

As far as the Prednisone (we all know and HATE it) and the Humira, I understand why you're scared. I feel the same way about Humira. I guess the only way to know is to try it, maybe ask to have your first few or so injections somewhere where you can get fast treatment?

I wish I could be there for you as a shoulder to cry on, but know that I'm thinking of you.
Judy
Crohn's Disease   
 
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 12/11/2007 1:29 PM (GMT -7)   
So sorry to hear about what is going on. As far as scared about reacting to Humira I told them at the office about my heart arrythmia and tachycardia that occurs when on remicade to me. I also had one time when I got dizzy etc. When you get your loading dose of Humira it is done at the GI's office so that the nurse there can show you how to give yourself the shot.

Also me telling her about my reaction to remicade they made me stay in the office for a good 30 - 45 minutes after the injections and they had me sit in a chair right outside of the dr's offices where the different GI's nurses would walk by often plus the nurse alerted me to where she was in case I needed her. Every 5 mins or so she would come out and check on me and she did my vitrals prior to injections, immediately following 15 mins after injections and before letting me leave the office. Since your reaction to remicade was much more severe than mine I am sure they would keep a very good eye on you. In total I think I was at the office a good 90 minutes or so. They do not need to premed me before my humira where as I needed benadryl, tylenol and 2 days of high dose pred the day before and day of my remicade infusion to try to lessen my reaction. I still had the tachycardia and arrythmia. I am tachycardic all of the time but it got very high about 130 my norm is about 107. Remicade also gave me chest pain so severe they almost rushed me to the ER a couple of times. I was on remicade 4 years before I started to get reactions.

The only issues I have with HUmira is local bruising, I use my legs since you are not supposed to give the shot within 2 inches of scars, belly button, stretch marks, or open wounds so the nurse saw my belly fistula and all and decided I dont have room on my stomach to give the shots to myself. The pens I found I tensed up a lot more than when I use the syringes. The loading dose kit is not available in the syringes though. With myself tensing up so much I would get bad headaches. I still do get the occasional headache from the humira but not like the weeklong migraine I would get each time I had remicade. Also there is no need to try and get a vein which is good on me since I have the worst veins ever. I even had my jugular vein collapse on the ER doc in mid november. I also would get bad joint pains about 1 week after the infusion so bad that i could not sleep. I do not have that issue with humira.

Hopefully this will help you as ithas helped me.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/11/2007 6:17 PM (GMT -7)   
Hi Vicky Hoping that they can get you straightened around with your meds and feeling better. Gee I am sorry that things went the way they did for you. Hoping things get better for you soon keeping you in my thoughts and wishing for the Best. Keep in touch and we are here when you need us. lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/11/2007 6:33 PM (GMT -7)   
Just wanted to let you know that you are definetly in my prayers. Sure hope you get feeling better soon.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


meg1111
Regular Member


Date Joined Mar 2006
Total Posts : 30
   Posted 12/11/2007 7:07 PM (GMT -7)   

Vicki,

Sending you get feel better wishes :-) !


SLE, Crohns


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 12/11/2007 7:31 PM (GMT -7)   
awwwww. *hugs* to you. good luck with the new meds!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
5mgs prednisone (getting there!), 50mgs 6mp, 4000mg pentasa, vicodin for pain & a boat load of other drugs for sleep and anxiety!


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 12/11/2007 7:34 PM (GMT -7)   
Vicky,
just seen your post. I don't know what it all means, is there a medication for this condition, do you know?
hugs,
Tess.

TN Girl
Regular Member


Date Joined Dec 2006
Total Posts : 37
   Posted 12/11/2007 7:57 PM (GMT -7)   

Vicky,

I'm sorry that you didn't get good news from your doctor.  Sending you lots of hugs.


Sherry
 
Living with Crohn's Disease in TN. 
Peri-anal Fistula in 1993 twice but wasn't diagnosed until 1995.
2 surgeries (1995 & 2005)
Happily Married to my Soul Mate for 18 years


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 12/11/2007 8:46 PM (GMT -7)   
hang on down under there!
randynoguts 



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


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/12/2007 3:13 AM (GMT -7)   
Hi Vicky, I am sending you a Big Hug. And my prayers are also with you.

teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 12/12/2007 9:18 AM (GMT -7)   
(((((Vicky)))), I am so sorry to hear of your news. Hang in there!! I hope things get better for you soon.
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...

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