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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/24/2008 5:44 PM (GMT -7)   
I have been on Humira for about 4 mths. and I was really getting some good relief from CD symptoms, but I have
been told to discontinue. Not only are my liver enzymes elevated, but they have found that it sends my triglyceride
levels through the roof. So thats it!! and I was so hoping this was going to work, as everything else has failed.

I'm hoping my crohns will keep in check for a while longer with the help of entocort. Otherwise... next step surgery.

Thanks for listening.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


ALI9
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 4/24/2008 6:02 PM (GMT -7)   

I too was on humira for a short time and had an allergic reaction to it and stopped. I went for a colonoscopy a couple months later, thinking I was going to have to have surgery for I had tried everything else with fail. I was shocked to hear the scope was clean and the humira had to put me into remmision. So hopefully you will have a bit of luck also, Good luck to you!!!


Dx: Crohns 1987 probually had since 1982 resections in 1992 an 2002
Gallbladder removed in 1986 The list can go on and on (if you know whatI mean)
Married 25 yr with a 17yr old son


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 6:09 PM (GMT -7)   
(((((((((( Vicky ))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/24/2008 6:26 PM (GMT -7)   
Hi Vicky just want to let you know that I am hoping that the entocort works for you, has it helped you before? lol gail

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/24/2008 7:01 PM (GMT -7)   
Gail, entocort, like pred only work while I'm on it. The docs don't like me to stay on then any longer than 6 months.
So I guess it's a wait & see game, but apart from the chronic pancreatitis pain, I seem to be symptom free.
That's the first time in a very long time. I'm still tired, but that's about it. Good huh!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/24/2008 9:32 PM (GMT -7)   
Oh, Vicky. What a disaster. I'm so sorry.

Is there any chance you could access Cimzia, Rem or one of the new trial meds, just to delay surgery a bit longer?

Hugs,

Ivy.
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/24/2008 10:10 PM (GMT -7)   
Sending hugs your way! My only suggestion (and this is coming from someone with NO experience w/ biologics) is there any way they could give you other medicines to treat the new issues? I know it wouldn't be ideal but if the Humira is working and you could stay on it.... I know there are plenty of cholesteral medicines. I have no idea about liver medicine though lol. I am so sorry you are in this situation and I hope you find your solution!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 4/24/2008 10:34 PM (GMT -7)   
I'm sorry Vicky. That's such a bummer. Have you considered trying LDN? There have been several posts lately documenting some success stories. I wish you good health with Entocort. It's been a great drug for me.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/25/2008 7:41 AM (GMT -7)   
Fitzy, the only med I've been given for my pancreatitis issue is Greon, a pancreatic enzyme. While this is not a cure (there isn't one)
it is supposed to rest the pancreas, at the moment it's working some.

The other med I take is tricor, which was keeping my triglycerides at a more sensible level of about 160. While I was on Humira they
went up to nearly 2000. So obviously, the other meds were of no use. Bummer.

I guess the real outcome of all of this, is that I will go back to having a bad time with both conditions!! Meanwhile I'm trying to enjoy
this respite of one of them. The stupid thing is, that both diseases cause very similar symptoms ie: stinky diarrhea (with fat) malabsorption,
and pain, although the pain does differ and are felt in different areas. So at least I know which one is active and which one is not, Sometimes
I get lucky, and it's both!!!!

Thanks guys for your kind words and encouragement, I don't know where I would be now (mentally) if I didn't have you. So for me you are
a Godsend.....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/25/2008 5:25 PM (GMT -7)   
Hi Vicky hope your CD is still not bad . Did you have your TI removed .I noticed you mentioned about the fat absorbtion how does it show itself in the stool? So what are you doing lately besides the Dr' visit's? lol gail

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/25/2008 6:53 PM (GMT -7)   
Hi Gail, my CD is not too bad right now. My surgeries have all been in the TI and parts of the colon.

Fat shoes itself in the bowel movement, like small circles of oily substance, that begins to separate as oil does
in water. I've also done many stool samples to find out as to whether I have fatty stools, and that was confirmed.
My Bm's are also very smelly. I think these 2 things combined is called stettoreah (sp)

As for me doing anything else, I've been kinda pushing myself to get the house in some semblance of order. I have
family coming from the UK and Canada. The clan is getting together again. I have 4 sisters and 1 brother. So, when
one decides to show up, the others have follow as well. It's a "just in case" thing. My oldest sister, is 72, and we all
worry now that every visit (which isn't very often) may be the last we are all together. I have to say, my brother
is the worst for thinking this way. Maybe it's because he's the only boy, a 53 year old boy!! I gotta say, I love to
see them all...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/26/2008 7:50 AM (GMT -7)   
Hi Vicky Thanks for the info I didn't quite know what the fatty poo looked like. Wow sounds like you are going to be busy. Do you find getting the house cleaned hard? I did the painting of the cupboards and seemed it took forever to get my house back in order. My teen is still coughing and studying hard so had to do it mostly by myself. Finding myself wishing for a maid ha and hee hee to that. I get body acky lately so things take alot longer. Have you started somewhere or like me still thinking what to do next. I got my doors to paint and other projects to do. I guess this must be my year for painting. Still cold out so I don't have to rush out and get all the yard work done. Hope your body is kind to you. Great you have a reunion to look forward to .lol gail

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/26/2008 9:26 AM (GMT -7)   
Gail, I wish for a gardener, a cook and a maid, but I guess us poor mortals are gonna have to want. Yes I do
a lot of thinking about doing stuff, before I actually get to do it. Like right now, I've put all this off until now,
my sister & BIL arrive Monday. Oh well. OH OH I did paint the dining room ceiling yesterday. That's good, right????
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

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