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Humira Club Support Group

I've been on Humira for 3 1/2 years and i've always thought the pen injections were much less painful in the stomach. Somebody suggested holding an ice cube on the spot you're using for a minute or so beforehand. That does help a bit, but I always forget.
 
I did my Humira today. The last two times I have done it on my left side and I don't experience as much pain. Also, I seem to notice more of a positive difference on the psoriasis but not so much with the Crohns yet
 
Humira seems to stop catastrophic trouble with me, but if I'm foolish I still have loose bowels. Ice cream, milk, now sometimes coffee and cola bother me, so Im getting more careful.
 
I'm bowing out of the Humira club after 4 years and 8 months! My most recent scope did show some inflammation in the colon, so they want to start me on Remicade this Friday.

Not sure why, I assumed both drugs were the same so if Humira has "stopped working" then surely the Remicade will be useless.

Either way. I'll miss this thread! :(

(Even though I rarely post :lol2: )
 
What other medication are u all on?
I take humira and azathioprine. I was given the option to stop my pentasa but I don't know whether too or not. Would it still be beneficial to take?
 
What other medication are u all on?
I take humira and azathioprine. I was given the option to stop my pentasa but I don't know whether too or not. Would it still be beneficial to take?
This is just me personally. My doctor switched me from pentasa to lialda. Besides pentasa , lialda and humira, I am on imuran , colestipol , VitronC and a probiotic.
 
I haven't been feeling so well lately and my dr wants to measure drug levels before the next injection. What would that show?
 
I haven't been feeling so well lately and my dr wants to measure drug levels before the next injection. What would that show?
My doc has me taking blood test every three months to check whether I'm developing ant-bodies against Humira.I thought it was a requirement for everybody.
 
I don't know, I was originally put on pentasa when first diagnosed but then when I got a fistula I was put on azathioprine and then as the disease has gotten worse I was boosted up to humira and told I can stop the pentasa if I wanted to but still take the azathioprine and have 3 monthly b12 injections
 

my little penguin

Moderator
Staff member
Pentasa only affects the top most layer of the intestine which is why it works ok for UC as a monotherapy but not so much for crohns (which affects all of the layers )
It can be used as an adjunct therapy with other meds
Ds was on asacol with 6-mp, Mtx , remicade .
I forget if we stopped it with remicade or humira .
Basically we trialed off of it and there was no change at all in symptoms (good or bad )
So for ds it wasn't doing anything


He was on pentasa for a month as a monotherapy
It did nothing at all for him
And he was placed on 6-mp

Good luck
 
Right now the humira seems more effective for the psoriasis than the Crohns.
Ron, I am sorry to hear that. We started the humira about the same time, although I am on a clinical trial with double the loading doses (16 over 4 weeks). I had a single shot last week and it seems to be working. I have had a few twinges of pain, but minimal. I am weaning off the Entocort as well, dropping from 6mg a day to 3. And yes, the psoriasis has cleared up. And I am eating like a pig. Crossing my fingers this lasts!! Bathroom trips are still loose & 3 to 6 a morning, but I do not mind that.
 
Ron, I am sorry to hear that. We started the humira about the same time, although I am on a clinical trial with double the loading doses (16 over 4 weeks). I had a single shot last week and it seems to be working. I have had a few twinges of pain, but minimal. I am weaning off the Entocort as well, dropping from 6mg a day to 3. And yes, the psoriasis has cleared up. And I am eating like a pig. Crossing my fingers this lasts!! Bathroom trips are still loose & 3 to 6 a morning, but I do not mind that.
I have had one person say it took them two months for the humira to be effective. Another person said four months. The psoriasis doesn't itch as much but I can still see the patches on my skin.
 
I have had one person say it took them two months for the humira to be effective. Another person said four months. The psoriasis doesn't itch as much but I can still see the patches on my skin.
Give Humira some time. It can take time to get started on the Crohns.
 
Hi , I just collected my humira from the pharmacy and I was told by the pharmacist that from next month the amount of liquid in the pen is to be reduced by half(not the dosage just the carrier liquid) , she said this will reduce any pain felt significantly , hopefully this is true and will help taking humira much easier .
 
Hi All, I'm writing this seven days after taking the loading dose of Humira. I've started having severe stomach cramps which i'm having to take Codeine, slow release Morphine and Oramorph to deal with the pain.

Is the cramping a typical side effect of Humira that gets better over time?

Thanks again everyone.
 
My daughter been on Humira for 1 1/2 years and starting to cramp, hurt, skin issues after her last two injections, wondering if that means it's starting to bomb out?
 
Can you just stop taking Humira if dr says ok to, or do you taper off? Also, till we see dr this Tuesday we wondered if by missing Sunday (her reg schedule injection day) till we can talk with him, would that hurt anything? I mean I know you can only give opinion and that's understandable.....this will be a new GI
 
Can you just stop taking Humira if dr says ok to, or do you taper off? Also, till we see dr this Tuesday we wondered if by missing Sunday (her reg schedule injection day) till we can talk with him, would that hurt anything? I mean I know you can only give opinion and that's understandable.....this will be a new GI
I assume that humira is just like any other biologic and you can go off it without tapering. I would say better safe than sorry concerning your second question.
 
Can you just stop taking Humira if dr says ok to, or do you taper off? Also, till we see dr this Tuesday we wondered if by missing Sunday (her reg schedule injection day) till we can talk with him, would that hurt anything? I mean I know you can only give opinion and that's understandable.
I was told recently by a IDB nurse that you can leave your injection day for a couple of days.
 
My Humira arrived yesterday. I didn't realize it was here until several hours later. It was still cold. Is it okay for me to use?
yes it should be fine, you can leave it at room temp for 14 days now. Just check that the liquid is clear before you inject.
 
Ron
There's a notice on the Humira two pack box that says it can be left out for 14 days if its kept out of the light. A few hours shouldn't be a problem, but I'm protective of it too, since I'm injecting it.

Mine is usually sent on a Monday and delivered on a Tuesday in a box with styrofoam packing and frozen ice packs. But the ice packs are always soft and not that cold when I open the package.
 
Ron
There's a notice on the Humira two pack box that says it can be left out for 14 days if its kept out of the light. A few hours shouldn't be a problem, but I'm protective of it too, since I'm injecting it.

Mine is usually sent on a Monday and delivered on a Tuesday in a box with styrofoam packing and frozen ice packs. But the ice packs are always soft and not that cold when I open the package.
I get anxious about it too. My IBD nurse told me to hold it against light and and if there are any strands floating in it then to contact the pharmacy company to have it replaced. Better to be safe than sorry.
 
I have been getting lots of bruising...no idea how they happened. Several on legs and now one on upper arm/tricep. Seeing doctor next week so ill ask him about it i guess. Sigh
 
Hi , I just collected my humira from the pharmacy and I was told by the pharmacist that from next month the amount of liquid in the pen is to be reduced by half(not the dosage just the carrier liquid) , she said this will reduce any pain felt significantly , hopefully this is true and will help taking humira much easier .
I got the new humira pen and used it last Wednesday and it seemed to go a lot easier than the older ones , the injection seemed to go in a lot faster , hopefully it was not just my imagination .
 

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Been on Humira about 6 weeks. Not sure it's dojng anything yet. I tried tapering off Entocort and had pain, so im back at 6mg of that. My doc's going to test my Humira levels in another month or so if my numbers aren't any better. My H & H, albumin, protein are all lower now than in March!
 
Humira can take a few months to get going. Just ride it out. The Budesonide should take care of the immediate issues while Humira is building up in your system.
 

my little penguin

Moderator
Staff member
Ds was on every two weeks
For about a year
Then every 10 days for a year
Then every 7 days for almost a year
And now every 5 days
Concerned he is running out of options
 

my little penguin

Moderator
Staff member
The nice thing about arthritis
No scopes needed
The Rheumo coukd "see" the humira was not keeping up with his arthritis right in the office by looking at his joints
I know of no one on every 5 days
 
Had a follow up scope last week and will ask them tomorrow if it shows any improvement. My blood count levels indicate that they want to bump me to weekly shots. Most days are good. Diet almost back to normal with some exceptions and I regained some weight, but have lost that again in the past 3 weeks. About 35lbs since last fall. Fatigue is common, but my lifestyle/circumstances allow for lazy days. The new normal.

Glad to hear you have some good days. Take them when we can get them. I am at the start of this journey. Hoping I stay where I am at and get no worse.
 
Had a follow up scope last week and will ask them tomorrow if it shows any improvement. My blood count levels indicate that they want to bump me to weekly shots. Most days are good. Diet almost back to normal with some exceptions and I regained some weight, but have lost that again in the past 3 weeks. About 35lbs since last fall. Fatigue is common, but my lifestyle/circumstances allow for lazy days. The new normal.

Glad to hear you have some good days. Take them when we can get them. I am at the start of this journey. Hoping I stay where I am at and get no worse.
I wish the same for you. I have am appointment in two weeks. I have a hiatal hernia that is acting up.
 
I'm currently on Humira every 2 weeks, but I started having symptoms again so the doc ordered a Prometheus ADA test. I'm waiting to hear back and I'm hoping I get bumped up to a weekly injection. He told me there's basically 3 possible outcomes of the test:
1. The Humira level is low and I haven't developed antibodies, which means increasing to a weekly injection.
2. The Humira level is where it's supposed to be and I haven't developed antibodies, which means it's not getting full effect and he'd add another immunosuppressant pill that's supposed to synergize with the Humira (and reduce my immune system even more).
3. I've developed antibodies, which means a switch to Remicade and losing a day's work for each infusion (I live an hour and a half from my doc - and the infusion center).
 
I'm currently on Humira every 2 weeks, but I started having symptoms again so the doc ordered a Prometheus ADA test. I'm waiting to hear back and I'm hoping I get bumped up to a weekly injection. He told me there's basically 3 possible outcomes of the test:
1. The Humira level is low and I haven't developed antibodies, which means increasing to a weekly injection.
2. The Humira level is where it's supposed to be and I haven't developed antibodies, which means it's not getting full effect and he'd add another immunosuppressant pill that's supposed to synergize with the Humira (and reduce my immune system even more).
3. I've developed antibodies, which means a switch to Remicade and losing a day's work for each infusion (I live an hour and a half from my doc - and the infusion center).
I wish you the best with your test
 
Met with the GI Doc this week- my appt was moved up from Sept as I ended up admitted to hospital last week for 3 days. White blood cell count was thru the roof-they still don't know why. They are taking me off humira and putting me on Entyvio. Methotrexate, and Entocort. My scopes 4 months on humira show zero improvement. Funny thing is I have had zero pain in over 10 days. Lots of liquid BM's- but no pain- also no red meat, wine or tap water.....
 
Met with the GI Doc this week- my appt was moved up from Sept as I ended up admitted to hospital last week for 3 days. White blood cell count was thru the roof-they still don't know why. They are taking me off humira and putting me on Entyvio. Methotrexate, and Entocort. My scopes 4 months on humira show zero improvement. Funny thing is I have had zero pain in over 10 days. Lots of liquid BM's- but no pain- also no red meat, wine or tap water.....
I hope the best for you.
 
I started Humira on June 1 of this year. I injected a dose last Wednesday, and I've been really sick since. I'm still on 50 mg. of Imuran and 3 mg. of Entocort each day. Is this normal? I'm kind of freaking out here.
 
I started Humira on June 1 of this year. I injected a dose last Wednesday, and I've been really sick since. I'm still on 50 mg. of Imuran and 3 mg. of Entocort each day. Is this normal? I'm kind of freaking out here.
I have heard of at least one person it took four months for the Humira to kick in. Call your doctor.
 
I thought about that, but it's Saturday, and calling Kaiser on a Saturday is useless. I'll just go into " flare mode": clear liquids and rest. In the past I would take prednisone when I felt like this. I just can't stand the thought of going back on that again. [emoji20]
 
I thought about that, but it's Saturday, and calling Kaiser on a Saturday is useless. I'll just go into " flare mode": clear liquids and rest. In the past I would take prednisone when I felt like this. I just can't stand the thought of going back on that again. [emoji20]
Do they have someone on call at the doctor's office? I would get doctor's permission before going back on prednisone.
 
Hi all,

Just a quick query; does anybody take Humira and find that they have increased energy but their pain levels haven't changed?

Thanks all

Tom
 
Isn't a support group great? You think you're in trouble or somehow abnormal and friends are here to give you perspective and tell you it happens to everyone fairly often. It always helps to talk to someone who shares your problem.
 
Well, I'm about to unsubscribe from this group as Humira is failing me.:stinks:

I was very hopeful in the beginning, the month of the loading doses was great but it went downhill from there. The last 6 months I've been on weekly but while my bloods aren't too bad strictures are forming again and while I have the occasional good days I can feel I'm slowly getting worse.
I'm a little gutted about it because I didn't have any side effects from the Humira at all and although the shots were painful I still rather have them than sit in an infusion centre every so many weeks, oh well.

So now the options are Remicade or join a phase III trial for etrolizumab.

It's most likely going to be Remicade as I don't want the inflammation to turn to more scar tissue. The strictures were dilated only 3 months ago and I can feel new ones forming (I'm getting symptoms of partial blockages again) so I hope the Remicade will kick in quickly once I'm approved for it!
 
Well, I'm about to unsubscribe from this group as Humira is failing me.:stinks:

I was very hopeful in the beginning, the month of the loading doses was great but it went downhill from there. The last 6 months I've been on weekly but while my bloods aren't too bad strictures are forming again and while I have the occasional good days I can feel I'm slowly getting worse.
I'm a little gutted about it because I didn't have any side effects from the Humira at all and although the shots were painful I still rather have them than sit in an infusion centre every so many weeks, oh well.

So now the options are Remicade or join a phase III trial for etrolizumab.

It's most likely going to be Remicade as I don't want the inflammation to turn to more scar tissue. The strictures were dilated only 3 months ago and I can feel new ones forming (I'm getting symptoms of partial blockages again) so I hope the Remicade will kick in quickly once I'm approved for it!
I hope the Remicade works.
 
I have a friend with UC who has been on Remicade for years and is enjoying a long remission. Hopefully you will have a good result.
 
I've been prescribed humira, does the injection hurt? Also does it work? I'm told once a month. Any positive feedback, or any side effects
 
I've been prescribed humira, does the injection hurt? Also does it work? I'm told once a month. Any positive feedback, or any side effects
Did not work for me, side effects minimal.....and the shots sting for a few seconds- didn't bother me. All mine were belly shots- the ones where the skin was grabbed into a little hill were a bit more uncomfortable than if the skin was pulled tight. (My kids doc taught me 25 yrs ago the tighter the skin, the easier the needle goes in- not one of my kids cried for shots) Good luck- Humira works for many.
 
Did not work for me, side effects minimal.....and the shots sting for a few seconds- didn't bother me. All mine were belly shots- the ones where the skin was grabbed into a little hill were a bit more uncomfortable than if the skin was pulled tight. (My kids doc taught me 25 yrs ago the tighter the skin, the easier the needle goes in- not one of my kids cried for shots) Good luck- Humira works for many.
The Humira advocate is afraid it might not be working for me but everyone is different.
 
I've been prescribed humira, does the injection hurt? Also does it work? I'm told once a month. Any positive feedback, or any side effects
It has worked will for 5 years for me. But the standard dosage is 1 injection every 2 weeks. Never heard of 1 a month before. In my case it put me in a long remission.

Right now, though, I am fighting a flare and I have concerns about possibly needing to up the dosage.
 
By a flare can you specify? I've had Crohn's for a few years. Other than going to bathroom very frequent . Everyday . Is that a flare? I don't have any pain.
 
By a flare can you specify? I've had Crohn's for a few years. Other than going to bathroom very frequent . Everyday . Is that a flare? I don't have any pain.
I had frequent bathroom trips for 2 yrs before one day- boom- the pain hit. That is when I was diagnosed. That is what I considered a flare- I am still in it as I am not in clinical remission. However today I feel great and think I can eat and do anything I want- I have learned- no I can't. I will suffer a day or two down the road- which might last a day or a week or longer.

I recently had a 2 1/2 week period when I had no pain. I know it isn't remission because my latest scope (July) showed zero improvement in the diseased section of my bowel.

Although having no pain is wonderful- it isn't the goal of my treatment- the goal is to lessen the amount of inflammation. Hard to grasp that, but it is my reality. Best of luck!
 
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