feels like giving up on Humira even though its helping my crohns.

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beca123
Regular Member


Date Joined Jan 2003
Total Posts : 224
   Posted 5/29/2010 9:01 AM (GMT -7)   
I was switched to Humira a year ago when Remicade(after 6 years) lost its ability to have any affect on me at all. I had a resection in Oct and had 5 abscesses removed 11 days after that, a second surgery. I wasnt started back on Humira until Feb. partly because I was on so many IV antibiotics to fight the infection. After not eating for 3 months(I also had pancreas problems) I was started back on soft foods and eventually a regular diet, I immediatly started having my old crohns problems again even though I was assured most people have a few good years after surgery of remission. I started the Humira up again in Feb and it worked ok, not like the remicade, my miracle in an IV bag, but it worked enough to get me out of the hospital. I am still having problems but I can deal with the degree I am at.
 
After I restarted Humira I began getting a horrible itchy rash on my thighs that covered them both no matter where I did the shot and it didnt matter that I rotated the sites. I started taking Benadryl with the shot and when that didnt work I moved up to Benadryl with the shot and also take claritin daily to try and fight off the "allergic reaction" i was having. after a few trial weeks, I called my doc again. He added 20 mgs of Pred to the mix, which i hate. and when that didnt work he upped it to 40.
 
He knows I am not happy about the pred but I will try anything. I do not know that I am willing or that he is to go up on the pred or take it everyday.
 
If this was just a normal rash or something that lasted a few days and went away I would be ok but this rash is, not to sound dramatic, AWFUL!!! its bumpy, red, itchy beyond belief and very frustrating. I have cried myself to sleep more nights than I can count because I am laying in bed with an ice pack on both my legs and have taken benadryl partly for the itching and partly because I cant sleep with all the horrid itching.
 
I am so frustrated that the only medicine that is half way working is making me break out. What is next? is there something else as effective? is my only other option to wait until i need surgery again? whats after Humira.
 
and am I being a baby? should I tough it out since the Humira is working some on my crohns. I hate to say this but I would almost rather deal with Crohns pain than this itching.
 
Looking for advice, should I toughen up and deal or should I stress to my doc that this is not working?
 
and whats next, after Humira?
 
Has anyone ever been in this situation?
 
I feel like crying.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/29/2010 9:14 AM (GMT -7)   
Did you ever try Imuran or 6mp?  Maybe those would be better for you than one of the biologics.  Whatever you do, please do get onto some type of med.  I am sure the rash is irritating, but I personally would rather have that than my Crohns.  Shudder!!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

beca123
Regular Member


Date Joined Jan 2003
Total Posts : 224
   Posted 5/29/2010 9:19 AM (GMT -7)   
I have tried all other medicines including 6mp. I was that way for a while but it is getting so bad I cannot live normally due to all the benadryl I have to take to make it bareable.
20 yr old female. dxd 2002. previously on 6-mp,Entocort, Prednisone, Flagyl, Cipro, Fiber, and Remicade. Currently on Humira and Elavil. Had first resection in Oct. 2009. (half of colon and some of small intestine)
 
 
 


Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 5/29/2010 1:28 PM (GMT -7)   
Hey yeah, I feel for you and I am wondering the same. What is after Humira ... what happens when nothing else works? That is a good question. I am the same in a way: I would rather have my colon back and I wish I wouldn't of had surgery to begin with, I think I too would have rather dealt with the disease rather than what I am going thru now. For me its the constant loud noises in my gutz that piss me off. And really I feel no better. I would say pay attention to that itching and try something different if there is, or at least consider other options if you have any. That itchy rash would drive me NUTS! Hang in there! GOOD LUCK! gurggle - scratch - gurggle - scratch - gurggle - scratch > boy would we make a pair! :oD
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun


In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/1/2010 7:39 PM (GMT -7)   
I am kinda in the same situation. I have been on Humira for over 2 years now and I am just getting over Shingles. They were on both sides of my body and I had to be admitted to the hospital and have been on anit-viral IV's for 11 days. They took me off Humira and Immuran and now I am wondering what to do. Same question as you.....what is next? Because of the immunosuppressants my body did not fight the shingles at all. None of the dr's have been able to tell me what the plan is. I do know that I definitely wouldn't want to take Tysbari. However I am considering checking out LDN.

Diagnosed with CD 1993



Currently taking Asacol, B-12, Folic Acid, Probiotic


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2010 7:45 PM (GMT -7)   
I started getting bad injection site reactions and normal antihistamines weren't helping, and someone here suggested Ranitidine. Weird, I know, but it really helped! Apparently it is a very specific antihistamine, on top of its more traditional uses.

Perhaps you could ask your doctor if you could try that before you give up on the Humira completely?

I'm sorry you're in such strife. Those rashes can make people feel completely miserable :-(.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 6/2/2010 1:28 PM (GMT -7)   
Has your dr mentioned trying Cimzia?  I don't get injection site reactions with it like I did with Humira, so maybe you won't get the rash with it.  And ivy is correct that Ranitidine helps with Humira reactions...my GI told me to try it and it did seem to help with the injection site whelts. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 6/2/2010 1:43 PM (GMT -7)   

WoW, you had 5 abcesses removed, then a second surgery so soon.

You have been through some really hard times.

I don't have any answers for you.

I would think prednisone would help a great deal with the itching, and should work within a week, very surprised it is not.

 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 6/2/2010 2:12 PM (GMT -7)   
I know it's not a popular option, but you could try enteral nutrition. It can be very effective, even for severe disease.
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