question for those of you on humira

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survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 10:38 AM (GMT -7)   
i have been having a rough week- it seems that my humira just did not kick in this time. last injection worked so well that i actually felt great for the first time since being diagnosed. i think that some of it may have leaked from the injection site, as my abdomen had some fliud around the injection site. any thoughts or experiences would be welcomed

Post Edited (survivor49) : 12/7/2008 12:08:19 PM (GMT-7)


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 12:09 PM (GMT -7)   
i am bumping this back in the hopes that i get some responses

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/7/2008 12:41 PM (GMT -7)   
I'm going through the same thing since my past injection which last Saturday I believe. Losing a lot of blood and fluid again as well as being unable to eat. Has this ever happened to you before? It's the first time I've experienced this, and I have to say I am worried about having to start a stronger medication should humira fail to do the job..
Let me know if you find anything more out.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 1:47 PM (GMT -7)   
when did you start humira? how often do you take it, and how has your response been to date?

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/7/2008 2:42 PM (GMT -7)   
I started taking humira on September 23 so it's been a little bit longer than I thought. It seemed to make things better until about November 23. I took my last shot on the 29 and still nothing has improved so I am getting right back to where I was pre-hospital in August. Ah right...and I take one pen every other week.
It worked well for a while but it doesn't seem to be doing anything now. Needless to say I am back on prednisone for at least a month and until I can figure something out with my doctor..
I'd like to know what's going on as much as you...it's such a strong medication that it's strange for it not to work out of the blue. But then I guess that's how it generally goes strength notwithstanding.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 3:56 PM (GMT -7)   
we atarted at about the same time. i had been having better responses with each injection. i am about to start my period, and that always makes me feel worse. perhaps since we are both having the same problem, it may have something to do with the weather or environment? keep me posted.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/7/2008 4:07 PM (GMT -7)   
I was wondering about that too...the cold always makes me lethargic and achy anyway, but I just don't feel as well now than I have before. Of course that might have something to do with the fact that I have neither the energy nor financial stability to be cooking away like I always did and/or eating the end result. Food was always such a comfort and I don't have that crutch to lean on anymore..

What kind of symptoms are you having when it gets worse???? And yes, your period might have something to do with it hah...I never had problems with mine until it came WITH Crohn's. That's a whole different story altogether I think. As if we aren't in pain and moody enough.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 4:31 PM (GMT -7)   
my worst symptom is pain. it is in the lower right side and sometimes radiates to my right thigh and under my ribs on the right side. it is not too bad in the am, but at around 4 pm it becomes more intense and doesn't go away until i fall asleep. I also have joint pain and swelling in my hands and right shoulder. i get little lumps on my thumb joints that go away when the pain and swelling does. i can have up to 20 bm per day, usually no blood. i also run a low grade fever- never more than 99.8. and then there is the fatigue.. it really sucks. what about you?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/7/2008 9:57 PM (GMT -7)   
Linda & Survivor, I just did my loading dose (4 pins) Sat at my drs office. He and the nurse say its prescribed 2 shots every 15 days and even my mail order pharmacy said the same. Linda your schedule seems different. Survivor what about yours? My sis does the same as me too.Thanks, Susie


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/7/2008 10:00 PM (GMT -7)   
it goes four shots and then 2 shots and then 1 every other week

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/7/2008 10:31 PM (GMT -7)   
Thank you, will talk to my gi again.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/8/2008 12:47 AM (GMT -7)   
Mine was the same as survivor's. I don't know how well I could handle two shots every two weeks anyway..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/8/2008 10:55 AM (GMT -7)   
how do you tell if the humira is failing? it shouldn't happen all at once, should it? I am just trying to hang on til my next shot and be hopeful that one will work.

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/8/2008 12:36 PM (GMT -7)   

I was on Humira from last Feb til the first of Nov. It never really seemed to help that much. I did get fatigue and headaches after each injection.

After my GI upped my dosage to one injection per week, I did get a bit better relief from the CD symptoms, but after my third or fourth weekly dose I had such extreme fatigue I couldn't get out of a chair. GI discontinued humira after that.

I've been doing a bunch of research on anti TNF's (Remicade, Humira, Cimzia, Tysabri, etc), and unfortunately the total percentage of CD sufferers that get relief from Anti TNF's is not very high. It depends on the med and study you look at, but it averages out to right around half.

I started Cimzia four days ago. I'm going to give it two months. If I don't get a *very good* response from it, I'm not going to continue it like I did Humira. I never felt like Humira did enough good to make up for it's side effects.


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/8/2008 1:52 PM (GMT -7)   
I'm waiting for my next injection this Saturday also..I'm really hoping it will work but don't expect much..I really hope yours will too...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/8/2008 2:24 PM (GMT -7)   
what symptoms are you having? my injection is on saturday as well.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/8/2008 2:36 PM (GMT -7)   
Hi all,

I'm just stepping in with a little bit of encouragement. Sometimes I feel that my injection hasn't done much at all, and then I do my next one and *bam* have a big improvement, as if the two shots are working together rather than separately.

Anyway, don't despair yet. Humira is a strange drug. I find that - for me, anyway - the improvements happen in fits and starts, rather than continuously.

I hope you will be able to get some relief on Saturday,

Ivy.
Co-Moderator Crohn's Forum.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/8/2008 2:42 PM (GMT -7)   
thanks a lot, ivy. it helps hearing from one who has been there

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 12/8/2008 4:26 PM (GMT -7)   
I've been on it for 2 years. My symptoms come and go, and my GI will often have me do a "double" dose to try and kick me back into symptom free living. Meaning, I take it every other week but have been having some issues on the 2nd week so he wanted me to try taking a shot that week and see if I see an improvement.

Right now, I'm having issues and will be seeing him next week. Sadly, the holidays typically throw me for a spin - the stress around it and my work load seriously increases.

Sometimes I won't get much relief from a shot and then a week or two later when I do another, I feel instantly better.

Talk to your GI about increasing your dosage to see if you can avoid a major flare.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/8/2008 4:50 PM (GMT -7)   
Thank you guys for the encouraging words...it really is a comfort to think it could get better come this Saturday. As for my symptoms, just the usual, inability to eat, constant BM's, losing blood and fluids, sleeping a LOT, and not really able to go anywhere because of weakness and fatigue. Good old Crohn's symptoms :) I really hope this Saturday works for us...I am HUNGRY!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 12/9/2008 10:13 PM (GMT -7)   
I've been on Humira for about a year and a half. My dose is once weekly 40mg. Yes, it does give me fatigue (like I can't get out of the chair) but so far it's working nicely for me. The fatigue for me is due to a persistant low grade continuous fever though. Nothing tylenol can't handle. Remicade failed me because I built antibodies to it. It does take a couple of months for the biologics to REALLY kick in good for the most part....hang in there and don't pitch it to the wind just yet. Keep a close food diary too cause I can tolerate a whole lot of foods now than I could when I first started the Humira...I was in pretty sad shape at the time. You want to be able to tell if it's the food you are eating versus the drug(s). I also back up the Humira with a rotating dose of 75-100mg of Imuran daily. I am a moderate to severe CD case.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.

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