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01-15-2016, 08:19 PM   #3001
my little penguin
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Why no bloodwork ??
We have done bloodwork more than once with colds
But his esr and crp are always normal except with major need to be admitted infections
Colds don't tend to have fevers
Hmmm
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01-19-2016, 09:34 AM   #3002
Ania
 
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We did not do blood work because I was afraid the results will be affected by his cold.
He hates blood work 1000x more then Humira injection ,and I did not want to take a risk we will have to repeat it.

After the visit.
It's too soon to stop the Humira. In 3 mos , if still no symptoms, we'll discuss options.
My son said he's happy he can continue the shots because they don;t hurt and he gets to get a reward. Crazy child.
01-19-2016, 11:50 AM   #3003
my little penguin
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If you stop humira then it may not work in the future
Your body produces antibodies when it's stopped
It does not typically cause anaphylaxis when restarted like remicade but
It does not work as well or at all
If he has jAS or JSpA that doesn't go away and is an aggressive disease
Meds are for life
Not sure on why you would stop once your in remission
Please get a second opinion before stopping
01-19-2016, 12:03 PM   #3004
my little penguin
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Going to tag maya142
Since she has been dealing with this longer
01-19-2016, 12:34 PM   #3005
Maya142
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I agree with my little penguin - I would not stop Humira. I would definitely get a second opinion before you even consider that.

My daughter has Juvenile Ankylosing Spondylitis. She was diagnosed with Juvenile Spondyloarthritis, and then it progressed when she was 16, despite treatment with anti-TNFs (like Humira/Remicade).

She was diagnosed with JSpA at 12. She is now 19 and is quickly running out of medication options. The thing with stopping a drug like Humira is that you can build antibodies to it if you stop it, and it may not work if you need to restart it. There are only a few drugs used for JSpA and so your options are very limited - even more so for kids who are diagnosed at a young age.

My daughter has always been on anti-TNFs but the disease progressed anyway. She has permanent damage in her SI joints and her hips and her right knee. We expect that she will need a hip replacement in her 20s. She is in pain all the time and is often up all night in pain.

I would not go off an anti-TNF even if he is doing well because research shows that most people with AS flare within a year of stopping anti-TNFs. The last thing you want is for the disease to progress. Once damage is done, it's done and there is nothing you can do about it.

And then if you have to put him back on Humira, it may not work and he will have lost one of his drug options (and since there are only 4 anti-TNFs, it's quite a big deal to lose one).

I would definitely get a second opinion and do some research before considering taking your child off Humira.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-20-2016, 04:04 PM   #3006
Spuds
 
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I just started the first 4 injections of Humira. What is the average time it takes to notice results ?
01-20-2016, 04:27 PM   #3007
Spuds
 
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Sorry, I forget to mention this is for Crohn's .
01-20-2016, 07:47 PM   #3008
2010mustang
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Average is 3 months some see results sooner.
01-20-2016, 10:32 PM   #3009
my little penguin
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Also some see results as late as 5 months

Hang in there
Hope you get results soon
01-21-2016, 08:17 AM   #3010
Salad_Shooter
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When I began Humira, I was desperately ill and thought I'd fade away if I had to wait 3 months before I saw improvement. After my loading doses, I came home, sat on my sofa and waited for hours for it to work. lol Like it would.

The next day, I went to WalMart to pick up a few things, and I felt like I had forgotten something. Something was not right, but I couldn't figure it out. I even looked to see if I had put on all of my clothes.

Then I realized what it was. I had NO pain. The pain was missing. Humira worked that quickly for me. Less than 24 hours. Funny thing....3 of us started Humira at the same time, and all 3 went to WalMart within 24 hours of the loading doses, and all 3 of us saw major improvement inside of that time period.

So, maybe the key is...after the loading doses....go to WalMart the next day. lol
01-21-2016, 07:45 PM   #3011
DanaBanana
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So, maybe the key is...after the loading doses....go to WalMart the next day. lol
Hahaha dually noted. I'm waiting for my loading dose....I opted for a nurse to come administer it and I also opted for the syringe rather than pen because o prefer to control the rate of flow. Presently on weekly 25mg MTX to continue along with the soon to begin biweekly Humira. Not really nervous...this is my third kick at finding something to bring me out if this flare. At this point whatever could work, I'm willing to try. ;-)
01-21-2016, 07:49 PM   #3012
Salad_Shooter
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Well, good luck to you! Humira was my best friend.
01-21-2016, 10:36 PM   #3013
DanaBanana
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Well, good luck to you! Humira was my best friend.
Thanks...I'm hoping so too! :-)

I have a question for anyone doing both mtx and Humira. Do you inject both on the same day? I just did my mtx injection but not sure when I'll be starting the Humira...I presume within the next few days. Wondering if it matters medically or if it's just rather more convenient.
01-27-2016, 07:16 PM   #3014
my little penguin
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When Ds started oral Mtx and humira
We were told different days just in case you had a bad reaction to one you would know which drug it was and not have to stop both

Good luck
01-27-2016, 07:45 PM   #3015
DanaBanana
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Good point. Well I get my loading dose of humira tomorrow midday....MTX injection isn't until tomorrow evening so I'm thinking I'll just ask the nurse when I'm getting my Humira. ;-)
01-27-2016, 08:13 PM   #3016
Salad_Shooter
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Good luck with the Humira! If I could buy that stuff on the black market, I would. lol No I wouldn't. I couldn't afford it.
01-28-2016, 11:41 AM   #3017
DanaBanana
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Yah, I saw the bill for my first order...3 boxes...almost $4500 dahummmmmm!
01-28-2016, 06:30 PM   #3018
DanaBanana
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Got Humira loading dose. Made me drowsy and somewhat nauseated after. Came home and had a nap. Still a little queasy and overall just don't feel well.
Mtx injection later. Nurse said it's fine to do it as it's an entirely different injection site.
01-30-2016, 12:57 PM   #3019
george john
 
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Have any of you guys been told not to stop taking Humira. I was told not to stop because body can build anti bodies to Humira. Put me in hospital for 6 days. now back on it every 7 days.
01-30-2016, 01:15 PM   #3020
george john
 
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I have some weird reactions with Humira,1st if I take shot on my right side couple inch from belly button it will swell up size of orange,on left side same distance from bb,no problem. 2nd reaction I get several small welts on diff area of my body at times. I take shots every 7 days on day 4 or 5 my skin breaks out n rash,then when i get injection fine till day 5 starts over n over been like that now over 10 years. Humira is worth dealing with side effect 4 me.
01-30-2016, 02:10 PM   #3021
DanaBanana
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I was told to take an antihistamine before injection if there's an injection site reaction. I didn't have one...though the left thigh site did swell a little and was sore. That injection stung like crazy though so wasn't surprised.
01-31-2016, 11:18 PM   #3022
Ania
 
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I agree with my little penguin - I would not stop Humira. I would definitely get a second opinion before you even consider that.

My daughter has Juvenile Ankylosing Spondylitis. She was diagnosed with Juvenile Spondyloarthritis, and then it progressed when she was 16, despite treatment with anti-TNFs (like Humira/Remicade).

She was diagnosed with JSpA at 12. She is now 19 and is quickly running out of medication options. The thing with stopping a drug like Humira is that you can build antibodies to it if you stop it, and it may not work if you need to restart it. There are only a few drugs used for JSpA and so your options are very limited - even more so for kids who are diagnosed at a young age.

My daughter has always been on anti-TNFs but the disease progressed anyway. She has permanent damage in her SI joints and her hips and her right knee. We expect that she will need a hip replacement in her 20s. She is in pain all the time and is often up all night in pain.

I would not go off an anti-TNF even if he is doing well because research shows that most people with AS flare within a year of stopping anti-TNFs. The last thing you want is for the disease to progress. Once damage is done, it's done and there is nothing you can do about it.

And then if you have to put him back on Humira, it may not work and he will have lost one of his drug options (and since there are only 4 anti-TNFs, it's quite a big deal to lose one).

I would definitely get a second opinion and do some research before considering taking your child off Humira.
Thank you. I have a lot to think about now.
I am very scared of possible long time side effect from Humira. I am also scared of arthritis.
The doc said we could possibly stretch the Humira to every 3 weeks, just to keep it in the system. Then do MRI once a year to monitor.
We have another app in April, so I will talk to her about my concerns a little more.
Thank you again Maya142. I really appreciate your comment.
02-01-2016, 05:46 AM   #3023
my little penguin
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When you increase the time between shots you still increase the likelihood of antibodies forming and the med not working . The half life is still the same.
Many researchers and docs tried this with remicade -
Standard is 8 weeks some tried 12 weeks and then folks developed antibodies .

Honestly damage from JAS is much worse then possible side effects .
Since once damage is done it's done
02-13-2016, 09:32 PM   #3024
Layla
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Well after being on Humira just about year now a recent MRE showed around 30 cm of inflammation. I'm not terribly surprised because I had been slowly going down hill for months now. I really only had the 1st month after the loading doses that was really good.

Now going to weekly, hopefully that will do the trick otherwise it is going to be Remicade.
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion, probably sarting a medical trial soon

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
02-13-2016, 11:53 PM   #3025
DanaBanana
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Well after being on Humira just about year now a recent MRE showed around 30 cm of inflammation. I'm not terribly surprised because I had been slowly going down hill for months now. I really only had the 1st month after the loading doses that was really good.

Now going to weekly, hopefully that will do the trick otherwise it is going to be Remicade.
Hoping for you this does the trick. So frustrating, though. The waiting for something to work. I just had my second dose of humira on Thursday along with my methotrexate. No changes for me...infact my guts have been giving me ugly pain since last night. Still exhausted and fevered.
02-14-2016, 03:36 AM   #3026
schwooters
 
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humira helped me pretty quick. after 12 days seen improvement.
after 5 months inflammation comes up again.
then going to weekly. until now everything is good !
02-16-2016, 04:22 PM   #3027
kavya
 
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When you increase the time between shots you still increase the likelihood of antibodies forming and the med not working . The half life is still the same.
Many researchers and docs tried this with remicade -
Standard is 8 weeks some tried 12 weeks and then folks developed antibodies .

Honestly damage from JAS is much worse then possible side effects .
Since once damage is done it's done
How much did you pay for Humira?
02-16-2016, 04:27 PM   #3028
kavya
 
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Hi

iam new to this site,my husband diagnosed with Ulcerated Stricture they call it as Crohn's but after 3 yrs of dragging not to take Humira/remicade now we had to make choice,doctor advised strictly he need to take injection so we preferred to take Humira?please give me some insight abt Humira?
I heard medicine cost lot more not sure if we can cover?heard abt assistance program?did they run all ur income proof?
02-16-2016, 07:37 PM   #3029
DougUte
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How much did you pay for Humira?
Hi Kavya.

I have been on Humira for over 4.5 years. I am on the Humira co-pay assistance plan, or I would not have been able to afford it. I pay $5.00 a month for Humira. That I can afford. If you have insurance the co-pay assistance plan will help with what insurance doesn't cover. If you are uninsured they have other assistance programs. Check it out at www.Humira.com.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
02-17-2016, 08:32 AM   #3030
kavya
 
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Hi Kavya.

I have been on Humira for over 4.5 years. I am on the Humira co-pay assistance plan, or I would not have been able to afford it. I pay $5.00 a month for Humira. That I can afford. If you have insurance the co-pay assistance plan will help with what insurance doesn't cover. If you are uninsured they have other assistance programs. Check it out at www.Humira.com.
My husband has good job? But insurance not that great!we already have so much billls piled up? Do u havd good job? Inspite they provided assistance program pls guide?
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