Starting humira and i have a few questions.

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Dan Embrey
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Date Joined Nov 2016
Total Posts : 34
   Posted 2/13/2018 5:12 PM (GMT -6)   
I’m starting humira on Thursday, just received my delivery of the needles/pens today. I’m Hopeful these will work.

I’m currently on 200mg Azathioprine and 10mg prednisone. I have been on various dosages of prednisone for over a year unable to get below 10mg without having a flare. When I start humira on Thursday I have been told I should be off prednisone within 2 weeks and I have also been given a 2 week course of antibiotics to take while I am taking all 3 medications.

Is timescale of 2 weeks realistic? Because from what I have read it can take months for humira to start working also what are the negatives taking azathioprine, prednisone and humira all at the same time?

iPoop
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Date Joined Aug 2012
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   Posted 2/13/2018 6:18 PM (GMT -6)   
Plan on 6 weeks or less to get a response on humira. Yes off of pred in 2-weeks is way too fast.

Take them all at once, as a 1, 2, 3, 4 punch can be a knockout punch combination.

Not so sure on the antibiotics though...
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Boss makes a dollar while I make a dime and that's why I poop on company-time...

Dan Embrey
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Date Joined Nov 2016
Total Posts : 34
   Posted 2/13/2018 6:40 PM (GMT -6)   
It seems like im in a lose lose situation. I think 2 weeks is way to fast aswell, but i dont know how i will react to taking all 3 at once.I guess i just see how many body reacts and fingers crossed that 2 weeks is long enough to get off prednisone.
Diagnosed with ulcerative colitis September 2016
24 Year old male from the United Kingdom

notsosicklygirl
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Total Posts : 16277
   Posted 2/13/2018 7:02 PM (GMT -6)   
A lot of these drugs reduce immune function, that is probably the biggest thing to look out for, infections... What are the antibiotics for? Which antibiotic?

After I got a debilitating infection on a combo of drugs, they told me I would have to take antibiotics as a preventative if I were to go on prednisone again while on biologics... I ended up having surgery, and I've been done with all the drugs for a few years. That said, it's pretty common for people to be on a biologic, and aza at the same time, and if there's a flare up on those drugs, they take steroids. Usually people don't take antibiotics, but some people have positive response to certain antibiotics, others have adverse reactions to antibiotics.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Mak37
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Date Joined Jan 2018
Total Posts : 312
   Posted 2/13/2018 8:26 PM (GMT -6)   
Some people wait 12 weeks before they see improvement, when I was in humira for 3 months I was also on prednisone for the whole time as well and I never got an infection or sick (just the flare up). But some people can get a lot of infections it’s different for everyone!
Dx with severe pancolitis with appearance of Crohn’s at 7 but actually had it whole life
After failing humira and not responding to IV steroids had to get my colon removed on January 27, 2018!! Still deciding on permanent or j pouch #nocolonstillrollin

Mrs. Brady
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Date Joined Feb 2015
Total Posts : 238
   Posted 2/14/2018 5:01 AM (GMT -6)   
I think 2 weeks is completely unrealistic, just my 2 cents. When I started Humira I saw some improvement at week 6 and felt really good by week 12. Best of luck, hope it works for you!
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira weekly
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/5/2018 4:39 PM (GMT -6)   
Hi OP here
OK so im about 2 and half weeks in. I have just dropped down to 2mg of prenisone but I feel awful. I guess 2 weeks was too fast, I have stomach cramps my energy has gone I’m going to toilet multiple times and blood when going to toilet, not having a great time right now. I have also been suffering with the flu for the last week not sure if its because I’m taking these 3 medications or just a coincidence.

I’m Unsure what to do because I don’t want to take any time off work. I really feel if I don’t go back up on my prednisone I will just get worse over time. But I don’t know how bad this will knock my immune system and could make my flu worse or even get an infection.

Not having a good time right now : (

Worse bit is I need to be fixed by April!!! Right now I work evenings and I calm down a bit by the evening but from April I will be starting at 8am and right now the mornings are hell.
Diagnosed with ulcerative colitis September 2016
24 Year old male from the United Kingdom

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 312
   Posted 3/5/2018 6:26 PM (GMT -6)   
Yea you will probably need to go back up on the prednisone, but all these medicines together are making your immune system low, so it is going to be hard to get the flu under control. I would call your doctor.
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 343
   Posted 3/5/2018 7:10 PM (GMT -6)   
Its my understanding that if you are on immune suppresants, you need to notify your doctor if you have to flu. You are at greater risk for complications. Hope you feel better soon!
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Down to 20 mg Pred. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

iPoop
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Date Joined Aug 2012
Total Posts : 12493
   Posted 3/6/2018 7:13 AM (GMT -6)   
I'd up the pred temporarily and call your gasteroenteroligist. You likely taper too fast and too soon.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

UC experience: wakeup with noisy bowels so no lingering in bed, soon after poop with discomfort/pain/mild-nausea, eat something, poop, get dressed, poop, leave in car and worry whole drive about more...

Dana37
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/6/2018 9:27 AM (GMT -6)   
I have been told that 6 weeks is the norm to start to see a response, however I am on humira now and previously took it for a year before. On both occasions when I started it had all but stopped a bad flare in its tracks by a week and completely stopped it by two.

I'm not over exaggerating. The first time round I had been flaring for a year before i started it and it stopped it almost immediately. So it is possible

countess18
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Date Joined May 2016
Total Posts : 226
   Posted 3/6/2018 6:26 PM (GMT -6)   
Dan

Go back up to the dose where you last felt okay. I had weaned off of prednisone while on approx my 8th or 9th week of Humira and I started to flare up. I went back on 5mg and stayed there for a month and a half then started weaning 1mg per week from there. I started showing major improvement on week 6 but don't think it really kicked in until week 13? I don't think going back up to 5 or 7mg will make you any more immunosuppressed than you already are.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

UCfireman
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Date Joined Nov 2017
Total Posts : 11
   Posted 3/7/2018 10:42 PM (GMT -6)   
Humira worked for me the very first time I took it 4 shots. Was in remission for almost 5 years until I developed antibodies. I like an idiot stopped taking it not knowing you would develop antibodies. I just kept some in the fridge and figured if things start up again I’ll just take it. Apparently that’s not how things work, I’m at what seems to be the end of a 8month flare thanks to Entyvio. I do feel I would still be in remission had I stayed on Humira the right way. I had zero side effect and I’m exposed frequently to all kinds of illness due to my profession, I never got sick. Humira was a great drug for me I hope it treats you the same.
Me

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/8/2018 8:48 PM (GMT -6)   
OP here again

Thanks for the advise I am going to Increase my pred as the last few days have been awful.I having a bad flare up and each day seems to be getting worse. But my flu is almost gone so my immune system is still there which is some good news.

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/8/2018 8:50 PM (GMT -6)   
Thanks for everyone’s responses it makes me feel like I’m not going through this alone. You’re all amazing people.
Diagnosed with ulcerative colitis September 2016
24 Year old male from the United Kingdom

ks1905
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Date Joined Sep 2005
Total Posts : 5090
   Posted 3/8/2018 9:55 PM (GMT -6)   
I’d ask to be tested for c.diff, I ended up catching c.diff when I first started humira. I thought it was a flare up but it was c.diff
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/9/2018 6:30 AM (GMT -6)   
Another thing to worry about. I don’t think it’s c.diff as I’m worse in the morning. Which is typical when I’m flaring. I’m guessing I would be really bad all day with c.diff. But I could be wrong
Diagnosed with ulcerative colitis September 2016
24 Year old male from the United Kingdom

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12493
   Posted 3/9/2018 7:19 AM (GMT -6)   
C Diff mirrors UC flare symptoms, and getting tested is the only way to really know. Just a good idea whenever your symptoms take a sudden nose-dive back into flaresville.

One C Diff sign is that your stool is exceptionally foul smelling...
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

UC experience: wakeup with noisy bowels so no lingering in bed, soon after poop with discomfort/pain/mild-nausea, eat something, poop, get dressed, poop, leave in car and worry whole drive about more...

Tannerx4
New Member


Date Joined Oct 2014
Total Posts : 11
   Posted 3/18/2018 6:00 AM (GMT -6)   
I have had uc for at least 12 years. I've tried every medicine out there before I did humira then remicade. Although it did help I noticed after the second infusion but it came at a awful price for my skin I started breaking out all over head to feet in big psoriasis and pústulas psoriasis tho they thought they said it was not from the medicine I just developed it out of the blue. So they kept giving the med I finally said enough I currently still have painful sores all over, hair out in chunks with painful sores,I can't walk right from the blistering sores on my feet. I finally got a new dermatologist that did a biopsy and I was allergic to the biologics humira and remicade and it takes a very long time to get over I'm 6 months now after my last infusion and still in sever pain. I honestly wished I'd never took it and opted for a bag. I don't mean to scare anyone it's just my experience with it.

limey
Regular Member


Date Joined Sep 2016
Total Posts : 48
   Posted 3/18/2018 8:38 AM (GMT -6)   
I was on Humira since last July with a shot every week and for awhile it seemed to be working.
Alas for me now I found that I was not getting any benefit from it and my GI has switched me to Entyvio .
Only had my first infusion so I guess time will tell.

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 3/18/2018 2:38 PM (GMT -6)   
I was told the same thing. This was 5 months ago. I am now still on humira and prednisone and have since added many more medications. Doesn't seem to be any sign of improvement. That is just me though. I have heard many people getting better on humira and eventually eliminating all other medications.

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/19/2018 5:13 PM (GMT -6)   
Hello just another update, I went to my GP on Monday the 12th march. We believe that I don’t have C-Diff or any other types of infections.

I have gone back up to 20mg of Pred which feels like a massive step back as I have been fine on 10mg for a few months, but this feels like a step I needed to make as my flare-up was just getting worse by day the day. I hope to return to 10mg fairly soon. I am just going to listen to my body and come down slowly on the Pred and someday be off them completely.

I just wish I could stay on pred and keep my bones 
Diagnosed with ulcerative colitis September 2016
24 Year old male from the United Kingdom

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12493
   Posted 3/20/2018 4:55 AM (GMT -6)   
You can always add mesalamine back to your list of meds. If you can get down to 10mgs of pred then perhaps also taking asacol/mezavant/lialda and/or rowasa enemas would help. Cumulative affect of many meds might be enough to get you there. It took a heck of a lot of uc meds for me to achieve a remission.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

"Don't make me angry. You won't like me when I'm angry." - Your colon

Rusty Barr
New Member


Date Joined Feb 2016
Total Posts : 4
   Posted 3/21/2018 7:03 AM (GMT -6)   
Been on Humira for about a year and a half now.
Overall. I'd have to give it an B+

Well. It probably deserves an A. But my eating habits are bad. I compromise and eats things I know I shouldn't eat often.

Also. I hate the ten seconds of hell. Burning bad during injection. As soon as the ten seconds are up, I pull the pen out and immediately the injection area burning pain stops.
I have found that prescription numbing cream, glopped onto the injection area about an hour before the stab, left on, then wiped off, area cleaned with disinfecting pads, then...injecting...that helps a lot with the burning pain for me. Takes it down from a 10 to a more tolerable 7.

Dan Embrey
Regular Member


Date Joined Nov 2016
Total Posts : 34
   Posted 3/24/2018 1:30 AM (GMT -6)   
Upped to 30mg of pred to finally get control. Still a bit of blood but but my stomach finally seems to be calming down. Need to start tapering asap I’ve had about 6 hours sleep over the past 3 days. Constant night sweats and clammy days.

A B+ for Humira? I hope it works for me soon. As for the injection itself I find it almost painless. I’ve seen a lot of people say it Hurts I don’t know if I’m using a different needle or a lower dosage (I believe I’m 40mg) or it could be I’ve just done bloods so many times I’m use to needles.

I’m about 5 weeks into humira now👍

Post Edited (Dan Embrey) : 3/24/2018 1:39:09 AM (GMT-6)

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