Has anyone got worse before getting better on Humira?

[nitty]

Hi there!

I have Crohn's colitis (more like just proctitis with this flare). I have had symptoms this time for nearly a year since having to change meds due to side-effects.
My symptoms are mainly urgency, frequent BMs and mucous. There was some blood, too, but that pretty much resolved with Salofalk granules.

I started Humira with 4 jabs a month ago, 2 jabs a fortnight ago and started giving my own single dose on Wednesday just gone.

So far, I have seen no improvement yet, but I wasn't expecting anything too radical as I have been inflamed for so long - things take time to heal.

However, this morning I have passed fresh blood with each stool - something which hasn't happened for months. I am gutted. I'm trying not to panic - maybe it's a small pile, although I can usually tell if that's the case.

Although I was prepared for things to take time to heal, I really didn't expect to go backwards at all in the process. Maybe it won't happen again, I will just have to monitor things over the next few days.

I just wondered if this was not unusual, and at what point do I call my IBD nurse about it?

 

[schwooters]

i received only 2 syringes when starting humira.
after 12 days the bleeding stoped and i was getting better very fast.
but i was also on high prednisone too.
if bleeding continues or getting more i would go to the doctor!

 

[nitty]

Thanks, schwooters (great name!)

I was wondering whether I may need a short course of pred to get things going but I don't know whether my GI will do that. When I had my first flare I had pred for a few weeks whilst Azathioprine was taking effect and that worked well, until 3 years later when my lymphocytes dropped and I also got a CMV infection. I think I will ask about that if things don't get any better over the next few days.

 

[Miss Underestimated]

Are you doing any better?

 

[nitty]

Thanks. No more blood, but a bit worse with the urgency and mucous. I got a quick reply from my IBD nurse. I will monitor things until I see her in two weeks time. She said they would expect to see an improvement within 6-8weeks, and if nothing changes in 12 weeks they will change treatment, possibly to another biologic. She will speak to my consultant to see whether a spell of steroids is an option or not.

I'm quite run down and stressed at the moment, too, which always makes me worse, so hopefully things will settle down soon on that score.

I know there are no guarantees, but it's hard not to be disappointed, especially when I waited for so long to start the Humira (it got postponed whilst other viruses were being dealt with).

 

[Zim]

Uh oh, reminds me my story. For me Humira not only failed, but I had the worst flare in few years on it. I started to bleed severely in probably a month after starting this violently advertised drug, and could't stop bleeding for a month (!) despite high dosages of Colocort.

Only two-week course of antibiotics (Ciprofloxacine + Metronidazole) finished flare. And for me my usually great response to antibiotics is one more argument for infectious mycobacterial (MAP) theory. Also during this flare I tried liquid nutrition and was very satisfied. The name is "Orgain Vegan Nutritional Shake", I may recommend it as partial or even full substitute nutrition to give bowel a rest during flares.

Following colonoscopy showed what I already knew: few months on this not so great drug with terrible side effects did nothing.

if nothing changes in 12 weeks they will change treatment, possibly to another biologic.

I've seen paper that showed low success rate (maybe 30%? Don't remember exactly) of a second anti-TNF blocker drug if first one failed (for example Remicade after failed Humira). That's why for me my docs decided to switch to Entyvio, which is also biologics but not anti-TNF.

Hugs..

 

[nitty]

Thanks Zim, I will look into the entyvio in case that's the way we go. It's one of the options my IBD nurse mentioned.

 

[Miss Underestimated]

We're all different. Humira has worked for me so far, but I take each day as a gift - I do not take it for granted.

There are some tests that can be done before you're put on a drug, to determine whether it will work for you. I guess not every insurance company wants to pay for genetic testing, though.

We're very fortunate that many other drugs have been approved and are in the pipline, and they use different approaches to controlling Crohn's besides the TNF alpha blockers. My Crohn's is the classic NOD2-CARD15 but there are many genes involved in this disease, and they are discovering more every day.

All that to say: Hang in there!