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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
 
ronroush7 said:
Right now the humira seems more effective for the psoriasis than the Crohns.
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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.
 
EastCoast902 said:
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.
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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.
 
ronroush7 said:
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.
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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
 
Momoftwo said:
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
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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.
 
Momoftwo said:
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.
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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?
 
ronroush7 said:
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?
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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.
 
JackG said:
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.
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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 having Crohns symptoms. My doctor wants me to have blood work and stool samples to see if the Humira is working.
 
I had to delay my injection today. Waiting for a call back from doctor . When I clean myself, I have been strong blood.
 
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
 
Tony H said:
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 .
Click to expand...

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.
 
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
 
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
 
I have both good days and bad days. My GI told me that is expected. My specialist told me I was in remission. How abo
 
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.
 
EastCoast902 said:
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.
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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).
 
StrayTaco said:
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).
Click to expand...
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.....
 
EastCoast902 said:
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.....
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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.
 
BrennieJoyce said:
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.
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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]
 
BrennieJoyce said:
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]
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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.
 
JackG said:
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.
Click to expand...

Amen
 
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!
 
Layla said:
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!
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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
 
Bonzo 4 said:
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
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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.
 
EastCoast902 said:
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.
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The Humira advocate is afraid it might not be working for me but everyone is different.
 
Bonzo 4 said:
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
Click to expand...

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.
 
DS has been on humira for 4.5 years
No issues
He takes it every 5 days now but was at once every two weeks at the beginning
 
Bonzo 4 said:
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.
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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!
 
Bonzo 4 said:
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.
Click to expand...

Right now I have constant "D", very painful bowel movements, and several runs to the bathroom per day. I have some pain in the lower right quadrant of my abdomen, which is where my Crohn's lives. No fevers and, surprisingly, no sudden weight loss this time. Weight loss usually hits with my flares. My pain is not the worst ever experienced with my Crohn's but it is there.

A flare would be anything showing there is disease activity. Frequent bathroom activity could be a sign of a flare.
 
DougUte said:
Right now I have constant "D", very painful bowel movements, and several runs to the bathroom per day. I have some pain in the lower right quadrant of my abdomen, which is where my Crohn's lives. No fevers and, surprisingly, no sudden weight loss this time. Weight loss usually hits with my flares. My pain is not the worst ever experienced with my Crohn's but it is there.

A flare would be anything showing there is disease activity. Frequent bathroom activity could be a sign of a flare.
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I have on and off frequent bowel movements , some minor bowel movements, little rectal pain.
 
DougUte said:
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.
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I take once a week and it is working great for me so far the injections hurt but rather that then the alternative good luck
 
ChrissyY said:
I take once a week and it is working great for me so far the injections hurt but rather that then the alternative good luck
Click to expand...

Thanks ChrissyY. My GI put me on another series of Budesonide and it seems to be kicking the flare into submission. I have an appointment in a couple of weeks and will see what he suggests for long term treatment. I hope we just stay on Humira every 2 weeks.
 
DougUte said:
Thanks ChrissyY. My GI put me on another series of Budesonide and it seems to be kicking the flare into submission. I have an appointment in a couple of weeks and will see what he suggests for long term treatment. I hope we just stay on Humira every 2 weeks.
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I don't know what Budesonide is I know before I found my wonderful GI doc they put me on so much crap. Because of other problems I am only able to take injectable meds mostly. My common channel (I believe that is the small intetine) is only 65 cm long so absorption is very limited. My first GI doc just didn't get that. 3 rounds of prednisone and almost 50 pounds later I said no more and found my "savior" he understood.
 
ChrissyY said:
I don't know what Budesonide is I know before I found my wonderful GI doc they put me on so much crap. Because of other problems I am only able to take injectable meds mostly. My common channel (I believe that is the small intetine) is only 65 cm long so absorption is very limited. My first GI doc just didn't get that. 3 rounds of prednisone and almost 50 pounds later I said no more and found my "savior" he understood.
Click to expand...
Budesonide is a steroid. It is also called Entocort.
 
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
 
ChrissyY said:
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
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Agree
 
ChrissyY said:
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
Click to expand...

Absolutely. Budesonide is a steroid, not as powerful as prednisone. I am on Humira for my maintenance med, so I understand about using injection meds. I had 3 feet of my small intestine and 6 inches of my colon removed because they were such a mess. Before my surgery I had a sudden weight loss of 40 lbs in about 7 weeks. I was a horrible mess, but I had people telling me how I looked wonderful because I lost weight.
 
Last night, after the injection, I counted to fifteen before I took the needle out. It seemed to be was on me.
 
ronroush7 said:
Last night, after the injection, I counted to fifteen before I took the needle out. It seemed to be was on me.
Click to expand...
I always use the yellow indicator to know when the injection is done. Basically the little window where you check the liquid turns yellow. Once it's completely yellow, then I take the needle out.
 
went to the GI last friday as I am starting to have symptoms for the last few weeks , started me on predfoam twice a day and upped my humira to once a week , hope I get improvements soon , been on humira for the last year and it had been great until recently, not used to feeling sick anymore .
 
Ds needed to increase to every 10 days after a year on humira
Then once a week after another year
He us now on every 5 days
So it can be increased and for him it takes about a month to kick in at the higher frequency

Then it's all good

He is also growing and gaining weight as a kid so essentially just outgrowing his dose
 
When I inject Humira, I have having a reaction at the site of injection. The nurse ambassadors stated it was normal, however when I showed my new GI doc, he stated it was not. He recommended that I take Benadryl 30 minutes before the injection. That worked last time, however the next day the heat, swelling and pain at the injection site was back. I had to take Benadryl every 4-6 hours and I basically slept for 4 days until the reaction went away. I have gained nearly 50 lbs in 4 months on Humira and none of my clothing fits. I'm pretty certain I am going to stop taking Humira. Anyone else have a similar reaction with swelling, heat and pain or even significant weight gain? Did you stay on Humira or stop?
 

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