Just started Humira and already want to stop!

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LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 1/13/2009 1:52 PM (GMT -7)   
I started my Humira end of Dec. so I have had the 4 initial doses + 2 + 1 and on maintenance dose of once every 2 weeks. Since starting the Humira I have a long list of new symptoms such as severe joint pain, especially in the knees and I almost feel like my bones hurt. I have a dramatic increase in headaches, redness in the face/hot flashes, some tingling in my hands when I exercise, and just started to slightly itch all over (nothing too bad though) I know its so soon to be thinking about stopping it but the more I read about the evils of this drug and the more I feel crappy since being on it, the faster I want to come off of it! Do you think I gave it a fair shot if I decide to give it only another month? I'm so scared of being on a biological drug and really want to try LDN.
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection at 15
Plenty trials of steriods, anti-biotics, Asacol, Pentasa, Immuran, Remicade.

Admitted for severe flare 12/2008
Avoided surgery once again - 1 ft diseased, narrowed lower intenstine found
treated with high does steriod/antibiotics - currently weaning off Prednisone

started Humira 12/14/08


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/13/2009 2:33 PM (GMT -7)   
I think I would bring your concerns to your doctor. I don't think I would be too happy with a med either if it made me feel worse than helped. Maybe you need to try something else.

I know there are some folks on this board using LDN. Some have had good results with it, others not. Its a very individual thing, much like our disease.

Good luck,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/13/2009 2:58 PM (GMT -7)   
I was going through a similar crisis last August... I made it through the initial loading dose in the hospital, and then my husband did the 2 "booster shots" a couple weeks later, and then when it came time for the single shot two weeks after that... I freaked out. I just could not calm down. So, you've already made it further than I did. I felt miserable on Humira, and it caused me huge amounts of anxiety.

I'm sorry you're in such a crummy spot! I think another month is more than a fair shot. But then, I'm a big chicken, as illustrated above! ;-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 1/13/2009 7:29 PM (GMT -7)   
I hated Humira....   Just wasnt for me.   I felt like I had the Flu every day

28 Yrs
Michigan
Newly diagnosed with Crohns


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13479
   Posted 1/13/2009 10:35 PM (GMT -7)   
I started the loading doses Dec and knock on wood so far no problems. I came off of Remicade to Humira. The Remicade was just making me too sick so it was time to change. I can honestly say Humira is helping me. I am very glad I am having no problems with it and I hope it continues. Wish I had been on it a long time ago. Susie


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 1/14/2009 3:04 AM (GMT -7)   
been doing it now since sep i think, nothing bad about it for me so far.. i have stopped my weight slide and actually gained back about 10lbs, good luck though
randynoguts 



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


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 1/14/2009 4:52 PM (GMT -7)   
Thanks guys. I was due to get my 1st maintenance shot on Monday and it has yet to come in the mail! (Pharmacy is terrible to work with so far) Starting yesterday I have had severe pains...enough to have me take pain killers to get through the night. Now it could of been the stupid mistake of eating a nutritional bar full of fruit nuts and "daily dose of fiber" that triggered the pain but in all honesty, who really knows what triggers my symptoms. I know for a fact that I cannot figure out - still after 20 years of suffering - what bothers me and what doesn't. I have a general idea but it always seems to change.

Did you guys notice that you started to feel crappy towards the time that you were due for a shot?? Maybe its coinsidence that I am overdue for Humira but I have heard that people feel their body is "needing" their dose when its time. I visited my dr today and of course has never heard of LDN and wants me sticking to Humira -what a shocker. Torn on what to do. I really can't tell if its working well for me.

For the first time in my life I have had continuous formed BM's and I am not sure if I can contribute this to Humira or the fact that I have introduced SCD yogurt into my life. Anybody get more "regular" from the Humira but still have pains?
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection at 15
Plenty trials of steriods, anti-biotics, Asacol, Pentasa, Immuran, Remicade.

Admitted for severe flare 12/2008
Avoided surgery once again - 1 ft diseased, narrowed lower intenstine found
treated with high does steriod/antibiotics - currently weaning off Prednisone

started Humira 12/14/08 (and not liking it so far)

started making SCD 24 hr fermented yogurt and have noticed a big difference!

Want to get off Humira and try LDN


lifeisrough
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/18/2009 2:11 PM (GMT -7)   
i have had the same problem glad to see i'm not the only one.
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