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Crohn's Disease Forum » Treatment » Humira/Adalimumab » How often do you Humira?


09-28-2015, 02:07 PM   #1
MissB122106
 
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How often do you Humira?

Just out of curiosity, how frequent are your Humira injections?
I have been on a weekly regimen for over a year. Are most Bi-weekly?
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Crohn's Disease (diagnosed 2010)
40mg Humira (Since July 2011)
Weekly regimen (since 2014)
"We are like islands in the sea, separate on the surface but connected in the deep"- William James
09-28-2015, 10:27 PM   #2
MDB
 
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MissB,
I was on the same dose every week for many years. I have aggressive crohn's and the shot every two weeks didn't cut it. I did the loading doses and started with Humira every other week for several months before I went up to the shot every week. This was when Humira was first out on the market and the dr. had to have many blood test result, etc. for the insurance companies to approve it. He said it was a logistical nightmare and I believe it!
I did that for years and still was only able to barely get by. This past year I tried Entyvio and it really didn't work for me and I fell completely apart. I ended up having surgery. Due to my case my dr. and I decided that once I was healed from surgery and everything looked good I would go back on Humira every other week as a maintenance/just in case dose. That was a month ago and so far all is ok.
I think the most important thing is to have you GI test your blood regularly and if this is the dosing that works I wouldn't worry too much. What I like about Humira is the fact you can take it at home instead of an infusion at the dr's office which was basically a day off of work for me. Hope you find the relief you need, good luck, and I would love to hear a success story if it does work.
Stay Strong
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Aggressive Crohns, Major Resection 2005, Total Protocolectomy 2015; Humira every other week.
Have been on just about every type of med., major perianal disease for 10 yrs. prior to ileostomy.
Stay strong never quit.
09-29-2015, 10:31 AM   #3
MissB122106
 
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MissB,
I was on the same dose every week for many years. I have aggressive crohn's and the shot every two weeks didn't cut it. I did the loading doses and started with Humira every other week for several months before I went up to the shot every week. This was when Humira was first out on the market and the dr. had to have many blood test result, etc. for the insurance companies to approve it. He said it was a logistical nightmare and I believe it!
I did that for years and still was only able to barely get by. This past year I tried Entyvio and it really didn't work for me and I fell completely apart. I ended up having surgery. Due to my case my dr. and I decided that once I was healed from surgery and everything looked good I would go back on Humira every other week as a maintenance/just in case dose. That was a month ago and so far all is ok.
I think the most important thing is to have you GI test your blood regularly and if this is the dosing that works I wouldn't worry too much. What I like about Humira is the fact you can take it at home instead of an infusion at the dr's office which was basically a day off of work for me. Hope you find the relief you need, good luck, and I would love to hear a success story if it does work.
Stay Strong
Blood testing is another concern of mine. I've been on a weekly regimen for over 1 year. Previously I was on bi-weekly regimen for 2 years. I have had a blood test done maybe once a year since starting Humira... Is that frequently enough?
09-29-2015, 03:41 PM   #4
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MissB,
I have an awesome dr. who I love. I was with the wrong GI at first and learned the hard way by being over medicated on prednisone, ended up getting shingles and osteopenia because this GI didn't specialize in Crohns, Colitis, etc.
My new GI takes blood every time I see him, which is usually 4 times a year.
I have become very proactive in my treatment because in the end it is your body. It does depend also on your health coverage, because more tests mean more bills. I grin and bear it because the one side effect most of us are scared about is a cancer that with a compromised immune system because of the Humira is really bad news!! Truth is untreated long term inflammation can lead to cancer as well. I think everyone finds the comfort level they need and acts on that. Testing your blood once a year isn't wrong, for me I want it done because of past experiences with drs that didn't do right by me in the past. I would ask you GI and see what his opinion is and if you still have concern get a second opinion. I think having a dr you know has your best interest at heart is vital and if yours is like that he/she will be glad to answer the question of needing more blood testing or if all is well. Hope this helps you out in some way. Stay Strong
09-29-2015, 09:46 PM   #5
my little penguin
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Ds started with every two weeks and was moved to every 10 days
He gets bloodwork at a minimum of every 2-3 months but he is also on mtx so they are watching liver numbers as well.

Good luck
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10-02-2015, 05:43 AM   #6
MikeinBklyn
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Started every two weeks and had to go with every ten days. Bloodwork every 3 months.

5 years +
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04-14-2016, 07:40 PM   #7
MissB122106
 
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Thank you everyone! I brought the concern up with my Dr. And he drew blood at that visit (came back normal) Now I recieve letters in the mail every 6 weeks stating: "...because of your condition, you need to schedule an appointment soon..." Part of me feels I just need a new doctor. Part of me doesn't want to start over with a new one. *sigh*

Does anyone notice that sometimes the Humira works better than other times? Some weeks I will feel pretty decent, I have more symptoms the closer to my shot days. And some weeks I feel about the same.
04-14-2016, 07:49 PM   #8
Pilgrim
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My daughter has been on a weekly Humira schedule for about 9 months. Some weeks she's great, other weeks I think I see Crohn's slipping in. It's hard to tell. Her symptoms jump out a little when there is a cold or flu going around. Could that be what happens with you?
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
04-14-2016, 08:07 PM   #9
MissB122106
 
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My daughter has been on a weekly Humira schedule for about 9 months. Some weeks she's great, other weeks I think I see Crohn's slipping in. It's hard to tell. Her symptoms jump out a little when there is a cold or flu going around. Could that be what happens with you?

Possibly. I work for a public school so I'm always near sick kiddos. I've been pretty lucky not getting too sick, but still have flare ups.
04-14-2016, 08:23 PM   #10
Pilgrim
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Same with her. It's as though she doesn't actually catch a virus, but bowel symptoms show up with maybe a runny nose.
We all had a stomach bug go through the house and she was the only one out of 8 of us left unscathed.
04-14-2016, 09:44 PM   #11
ronroush7
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I just finished my starter dose. My understanding is after this it will be every two weeks.
04-14-2016, 10:16 PM   #12
MissB122106
 
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I just finished my starter dose. My understanding is after this it will be every two weeks.
I was bi weekly for a year, but never reached remission. Being weekly has helped get me closer.
04-15-2016, 02:19 PM   #13
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I've been bi-weekly since 10/2014. I did very well in the beginning but I noticed symptoms coming back a few days before my next injection after about a year. Nowadays they came back after the first week. Speaking with my GI on Thursday to discuss options/injection frequency.
04-15-2016, 03:20 PM   #14
ronroush7
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Best to you

04-26-2016, 06:38 PM   #15
canary
 
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I've been bi-weekly for eight years but weekly for the past 6 months.
04-27-2016, 01:15 PM   #16
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Initially, after starting Humira - l was bi-weekly. There was no noticeable change so I switched to Remicade. That was really hard on me. Besides the long, tiring & naseous time spent on infusion day, I felt fatigued, weak, bruised easily, caught every little cold/flu bug around but my hair stared thinning. After just over 6 months of Remicade, l developed an anaphylactic rxn out of the blue. D/c'd the Remicade and went back to Humira. Again, doing bi-weekly doses...had a flare after 4 months of starting back up. That is when my G.I. doctor and I decided once per week was better. I have been on that regiment for roughly 3 yrs. Which leads me to present day. In the last month and a half, my extraintestinal manifestations of daily headaches, joint pain in both feet and ankles, wrists and neck have caused me to reassess things. I don't know where to turn next. I feel like once things are going smooth, some new symptom gets thrown into the mix and throws my whole realization of what works for me, completely off. My list of medications tried in the past are so long, an unhelpful. I have been seriously considering medical marijuana. Doing lots of research on strains hi in CBD and low in THC.

Good luck to you all. Don't stop advocating for yourself and your body. You suffer enough already. Chin up, stay positive!
04-28-2016, 01:58 PM   #17
hcrum87hc
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I'm bi-weekly, but Humira alone doesn't control my symptoms. I also take 150mg of Imuran daily. This combo therapy seems to be the trick for me.
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Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
04-29-2016, 11:37 AM   #18
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05-08-2016, 10:06 AM   #19
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Bi weekly here for last 2 years. I hate taking it and my Dr. said NO to removing me from it. So for at least one more year I'll be taking this poison. Yes, it has been my only option and it does work however, I get migraines and feel depressed a few days before my injections.
05-12-2016, 02:37 AM   #20
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bi weekly for 4 months after I got loss of response on infiximab. No antibodies, but after 7 years on infliximab, Crohn's just got active again. Hoping Humira does keep working. New scope next week to see how it goes.
05-12-2016, 02:41 AM   #21
ronroush7
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bi weekly for 4 months cafter I got a loss of response with infiximab. No antibodies, but after 7 years on infliximab, Crohn's just got active again. Hoping Humira does keep working. New scope next week to see how it goes.
Hoping the best for you.
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