Humira --side effects freaking me out

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GMSAF
Regular Member


Date Joined Jan 2016
Total Posts : 58
   Posted 6/2/2016 3:33 AM (GMT -6)   
I am scheduled to start humira tomorrow. I'm freaking out about the side effects. I'm 34 with a newborn, 2 and 4 year old. I need to live a long life for them. If it was just me this decision would be easy. But I can't afford to have a serious infection or malignant and risk death. I have to be around for them. I'm torn up , my only other option is trying an extremely high dose of prednisone and buying more time but I'm not responding and I'm at 40 now. Should I try to wait a few more months so I can do entyvio instead ? It seems less scary ... Feeling so emotional which is so unlike me but I just feel so disappointed that within 8 months of my initial diagnosis I'm already at this stage in the game. No time to enjoy my newborn or maternity leave. Ugh.

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 3094
   Posted 6/2/2016 4:57 AM (GMT -6)   
Do you actually know if you get side effects? If not, don't worry about it until you actually get them. Most likely it's not going to happen.
UC since 2002
Past treatments: Steroids, 5-ASAs, immunosuppressants, biologicals
Currently on 100 mg Azathioprine (Imuran), CCherbal (as needed), Wellbutrin 150 mg, Zoloft 50 mg, Klonopin 1 mg (as needed)
Scope on 3/6/2014 showed no inflammation but scarring

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12510
   Posted 6/2/2016 5:52 AM (GMT -6)   
I've been on remicade for two years and I haven't experienced a side effect. They're extremely small odds of getting side effects from biologics. Risks versus benefits are an important discussion to have with your doctor before starting a new treatment. The odds of humira improving your uc symptoms are 60+ percent. The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent assuming biologic + immunomodulators) compared to 2 in 10,000 ( or 0.02 percent) for the general population. Of those who get it, 66 percent are able to put it into remission. The potential benefits far outweigh the risks. To put the biologic risk into perspective. We have 1 in 5 odds of death due to heart troubles. There's a 1 in 133 odds of death due to an automobile accident in the usa, yet we don't hesitate to get in our car each day. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Increased risk of infectious refers to the type of infections that ordinarily require antibiotics to treat. Stuff like bronchitis, sinus, UTI. Regular cuts and bruises are no worry at all. If you're prone to infections requiring antibiotics or suspect you have one, then seek your general practitioner doctor early rather than try and wait it out. Your immune system is a little weaker, the onset of symptoms will be stronger and quicker. If you ignore it, and don't seek treatment then it can become a serious infection requiring hospitalization (like sepsis). Often they can be treated.
Moderator Ulcerative Colitis
John
, 38, UC in histological remission
Rx: Remicade @5mgs/kg/8wks

You can't spell sUCks without UC.

Post Edited (iPoop) : 6/2/2016 5:55:40 AM (GMT-6)


Jay79
Regular Member


Date Joined Jun 2011
Total Posts : 180
   Posted 6/2/2016 12:16 PM (GMT -6)   
I wish I could be back on Humira. It was so easy and convenient, but it didn't work for me.
The only side-effect I experienced was a very minor case of hives that went away with a little over the counter allergy medication.

It's a two edged sword reading over the possible side-effects a drug might have.
It's good to be prepared for possible side-effects, but don't assume everything on that list will happen to you.
Each of us are very different and respond to medications in our own way.
Diagnosed with Pancolitis 05/2009
Lialda 04/09 - 09/11, 07/12 - 03/15
Humira 09/11 - 05/12
VSL#3DS 01/12 - 05/12
6MP 50mg 04/12 - 05/12
Remicade 05/12 - 5mg/kg every 8 weeks
Remicade 08/15 - 10mg/kg every 6 weeks
Multi vitamin, Vitamin C, Vitamin D3 and Calcium supplements
Metamucil

GMSAF
Regular Member


Date Joined Jan 2016
Total Posts : 58
   Posted 6/2/2016 2:32 PM (GMT -6)   
I took it. It's all in Gods hands now.
Diagnosed nov 2015 during my third pregnancy , now in postpartum flare , took prednisone for 4 months while pregnant as well. Was on subtherapeutic dose of delzicol when pregnant.
Lialda, 4,800 mg daily started late April 2016
Currently prednisone 30
Vsl3, turmeric

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4104
   Posted 6/2/2016 3:05 PM (GMT -6)   
Just remember, you are doing something about the risk of colon cancer you had if you did nothing.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Verucasalt2.0
Regular Member


Date Joined May 2016
Total Posts : 210
   Posted 6/3/2016 1:54 AM (GMT -6)   
Hi GMSAF! I just started Humira too and was scared as well. I've been OK, got a fever but it went away as fast as it came. It'll be OK.

Something to make you laugh, ease the worry. I was burning down there pretty bad, pretty sure it's hemmoroids, oh the joys of our disease!. Being paranoid because of being on Humira, I emailed my GI doc. I was in a hurry when I emailed and didn't review what I wrote very well. LOL, in the subject line of my email it should have said Possible hemmoroid problem...frick'n auticorrect, it said Possible moron problem. I sent it like that. And normally I hear back from care coordinator nurse but it was the actual doctor who emailed me back. Yeah, he didn't mention the moron thing, just prescribed me steroidal rectum cream. 😝
Dx'd with UC 2/15, also have: psoriasis, psoriatic arthritis, Graves and Thyroid Eye Disease
Current meds: Humira + Balsalazide, levothyroxine, Zyrtec + Flonase for allergies
Supplements: iron, Biotin, tumeric, probiotics

What does not kill us makes us stranger - Jessica Jones

GMSAF
Regular Member


Date Joined Jan 2016
Total Posts : 58
   Posted 6/3/2016 2:19 AM (GMT -6)   
Verucasalt2.0 Lol that sounds like something that would happen to me ! 😳

Just curious how long have you been on humira ? How long did it take to help ? I'm getting tired of my nightly painful hours in the restroom w my newborn wheeled in in her bassinet. (Daytime is tolerable usually). It's the reason I bit the bullet and took the humira , looking forward to a response !
Diagnosed nov 2015 during my third pregnancy , now in postpartum flare , took prednisone for 4 months while pregnant as well. Was on subtherapeutic dose of delzicol when pregnant.
Lialda, 4,800 mg daily started late April 2016
Currently prednisone 30
Vsl3, turmeric

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/3/2016 6:03 AM (GMT -6)   
The rate of serious side effects from biologics is very low. The rate of serious side effects with long-term steroid use is extremely high. I'm also on Remicade and infections haven't been an issue for me. I get a cold maybe once every two years. I'm also diabetic thanks to steroids, so am careful to clean injuries carefully and cover them, but I've had no skin infections at all.

All in all, my biologic has been a very problem-free treatment for me.
Thyroid forum moderator

Ulcerative colitis; 10thyear of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids. #ucsucks

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/3/2016 12:16 PM (GMT -6)   
I've been on Humira for over 2 yrs, the only side effect I got was horrible headaches, what worked for that was taking an antihistamine before bed the day I do my shot....I take it weekly, not biweekly and still no issues, it has put my crohn's colitis into remission and closed up my rectovaginal fistulas...I'd say the positive outweighs the negative for me since my body is prone to having bad reactions to IBD oral meds, I couldn't tolerate any of them and suffered for 23 yrs with my crohn's colitis until I finally became a candidate to go on Humira due to the fistula.

Don't worry about the what if's unless you have to, and stressing out about it won't help your health, I know because I also developed IBS about 12 yrs into being sick with Crohn's because of the emotional stress the Crohn's caused me and I'm still trying to deal with my IBS.
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.

Verucasalt2.0
Regular Member


Date Joined May 2016
Total Posts : 210
   Posted 6/3/2016 5:44 PM (GMT -6)   
@GMSAF, I've been on it a month. I've noticed small changes but nothing dramatic. I didn't have a great morning today, one step forward two steps back it seems. Im gonna be patient and stick with it.

I hope it kicks in for you, so can focus on your baby, not the frick'n bathroom.
Dx'd with UC 2/15, also have: psoriasis, psoriatic arthritis, Graves and Thyroid Eye Disease
Current meds: Humira + Balsalazide, levothyroxine, Zyrtec + Flonase for allergies
Supplements: iron, Biotin, tumeric, probiotics

What does not kill us makes us stranger - Jessica Jones
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