I can't find the group for testing, has it been deleted maybe?
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.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?
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 haven't been feeling so well lately and my dr wants to measure drug levels before the next injection. What would that show?
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.Right now the humira seems more effective for the psoriasis than the Crohns.
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.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 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.....this will be a new GI
I was told recently by a IDB nurse that you can leave your injection day for a couple of days.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 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.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 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 .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 wish the same for you. I have am appointment in two weeks. I have a hiatal hernia that is acting up.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 you the best with your testI'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 hope the best for you.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 have heard of at least one person it took four months for the Humira to kick in. Call your doctor.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.
Do they have someone on call at the doctor's office? I would get doctor's permission before going back on prednisone.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 hope the Remicade works.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!
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.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.
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.
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.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.