New to the site, just started Humira and wondering if anyone else had these side effects?.....

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DCS54B
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/26/2010 6:00 AM (GMT -7)   

Hi All,

 

I am new to this site and have been battling CD since 2005 - it took a long time to get the diagnosis and I have been on and off of almost all the conventional therapies since then but have never found remission or anything even remotely similar.  Each time I come down below 20mg of Pred, I seem to completely crash and flare even worse.  My GI decided to put me on Humira and I started that a week ago today.  As is typical with the Crohn's starter pack - I took 4 shots last week and am scheduled to take 2 more shots next week. 

 

At first, the only side effect I really had from the shots was fatigue, I was really tired the evening after I took it and the following day.  Then I started feeling like I was fighting something and just had a general feeling of not feeling well.  I also started sweating a lot and going in and out of cold sweats.  That has gotten a lot worse over the course of the week and now I am clammy, have chills and sweats a lot of the time.  I go through periods where I feel OK and others where I feel bad.

 

I am very hopeful this Humira will bring me into remission and make me feel a whole lot better but I have not seen chills, cold sweats, etc......listed as typical side effects and I am a little concerned about it.  Has anyone on here felt like this shortly after starting Humira and if so, how long did it last and what did you do about it?

 

Thanks so much in advance for your help, I appreciate it!


DCS 54B
 
Crohn's DX in 2006 but sick for well over a year before that. Currently just started on Humira, Pred - 40mg (hoping to taper off of this soon), Phenergan 25gm prn, Percocet, Pentasa 500mg, Protonix 40mg and Lomotil, prn. 
 
I live my life to the fullest, enjoy every day and am excited for the day when we will be able to say good-bye to CD and UC.  I am becoming active in my local CCFA chapter and have found them to be a wonderful resource!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/26/2010 8:09 AM (GMT -7)   
Hi DCS54B and welcome to Healingwell. I am not currently on Humira, but have heard many times that many after their Humira or Remicade will feel fatigued and flu like symptoms for a few days after their injections. Hopefully one of them will be along soon and provide more info for you. Just wanted to take a minute and welcome you to the forum.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/26/2010 12:19 PM (GMT -7)   
I used to feel fatigued after Remicade, but never felt fatigued or like I had the flu after Humira.  When I was on a clinical trial for Cimzia, I felt tired after the injection, but I don't now that I am back on it, so maybe it was just that I had to walk a few blocks from the hospital to my truck after the clinical trial injections.  I've heard people say they feel tired afterwards, but I would ask your doctor about the side effects you are having. 

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


DCS54B
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/26/2010 1:30 PM (GMT -7)   
Thanks for the welcome and the info - I have enjoyed reading several of the posts on this site over the past week or so since I found it.  I look forward to meeting several of the folks on this site and using it as a positive force to deal with my Crohn's.
 
ZenaWP - thanks for the info and for sharing your experiences.  I actually did call my Doctor this am and talked with the nurse.  She said she had never heard of that being a side effect of Humira and told me that it might just be my body regulating to it since the first dose is so strong and then she said she wouldn't worry about it.  I know I have a tendency to worry too much sometimes but it was a big decision to start this med and I just want to make sure that there is nothing there that I need to really pay attention to with regard to these sweats and chills + it just makes you feel gross.
 
Thanks again for the info! 
DCS
DCS 54B
 
Crohn's DX in 2006 but sick for well over a year before that. Currently just started on Humira, Pred - 40mg (hoping to taper off of this soon), Phenergan 25gm prn, Percocet, Pentasa 500mg, Protonix 40mg and Lomotil, prn. 
 
I live my life to the fullest, enjoy every day and am excited for the day when we will be able to say good-bye to CD and UC.  I am becoming active in my local CCFA chapter and have found them to be a wonderful resource!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/26/2010 3:31 PM (GMT -7)   
DCS, are you running a temperature when you have these symptoms? Remember, if you get to 38C, you need to go to the emergency department immediately: do not pass go; do not collect $200; etc.

Another thing that might help you is to take an antihistamine half an hour before you inject. This may help modulate your body's reactions to the Humira and make life a little more pleasant for you. I recommend you ring your nurse and ask her to recommend a suitable brand for you.

Lastly, remember those four injections are a huge dose, and that (we hope) you'll never have to take so large a dose again. You may well find that things are easier when you do your two injections next time, and even more easy once you're down to one syringe a fortnight.

Welcome!

Ivy.
Co-Moderator Crohn's Forum.

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


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/26/2010 8:14 PM (GMT -7)   
I would suggest you call the Humira help line. The number is in the booklet that comes with your starter kit.
I was on Humira, but never had the reactions you're talking about. So, if only to put your mind at rest, give
the help line a call, there is a nurse on call for such things.

I wish you luck.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


DCS54B
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/27/2010 5:10 AM (GMT -7)   
Thanks so much to everyone for your replies, I really appreciate it! I have talked with my nurse as well as with the nurse on call for the specialty pharmacy and the Humira on call nurse. At this point, none of them have heard of side effect symptoms like the ones I am having. They have all said that it might just be my body trying to regulate to the dose and / or it could also be that I am fighting something.........it is sinus season and there are a lot of people in my office sneezing, coughing and carrying sinus infections and viruses.

On that note, for those of you who currently take or have taken Humira - did you notice that you got sick a lot more often? Were there certain things that you did to try to keep this to a minimum?

Thanks again!
DCS 54B
 
Crohn's DX in 2006 but sick for well over a year before that. Currently just started on Humira, Pred - 40mg (hoping to taper off of this soon), Phenergan 25gm prn, Percocet, Pentasa 500mg, Protonix 40mg and Lomotil, prn. 
 
I live my life to the fullest, enjoy every day and am excited for the day when we will be able to say good-bye to CD and UC.  I am becoming active in my local CCFA chapter and have found them to be a wonderful resource!


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/27/2010 6:43 AM (GMT -7)   
I didn't notice that I was picking up virus any different to before, but I know some did. Sorry I can't be of anymore help.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 4/28/2010 1:46 PM (GMT -7)   
     I have ulcerative proctitis and had my initial injections of Humira on March 24th.  I built up antibodies to Remicade fairly quickly, after my 3rd infusion.
     So far, so good on the Humira.  Keeping fingers crossed.  However, I am still on prednisone, tapered down to 10 mgm today and I do use rectal meds.  I started taking B-12 vitamins about a week ago.  Don't know whether it is a coincidence or not, but I sure feel a LOT better. 
     I never had the symptoms you are experiencing with the Humira, but I did on the Remicade.  After my 3rd infusion I had flu like symptoms.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed. Now on Humira, Colazal, 20 mgm of Pred and tapering, Cort enemas, Canasa, Calcium with D, Benecar with water pill for blood pressure.  Ambien/Tylenol PM for sleep.

 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/28/2010 2:54 PM (GMT -7)   
Reducing your risk of catching infections:

a. Make sure everyone knows you are vulnerable to infection, and that they should make an attempt to steer clear if they are ill. Enforce this as much as possible.
b. Wash your hands often; try not to put your hands anywhere near your nose / eyes / mouth, esp when you are out in public.
c. I carry a little pack of hand-sterilisation gel, and use it whenever I have been in a potentially-infectious place (e.g. doctor's waiting room, after greeting of peace at church)
d. I make an effort to use my own pens to sign forms, instead of the communal pens offered at banks, offices, etc.


I'm sure you can think of your own ideas too.
Co-Moderator Crohn's Forum.

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

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