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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira - any positive stories


 
11-06-2013, 06:02 PM   #1
AussieChick
 
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Humira - any positive stories

Hey guys,

So I am starting Humira in 2 weeks on top of my Imuran and Allopurinol.

Can anyone tell me positive experiences using Humira? I've seen a lot of negative and I'm terrified. But my GI thinks this is exactly what I need, especially after not improving with any of the other meds, and I do trust him.
Just wanting to read positive stories.

Thanks
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Crohn's you're an ASS!!!
Current Meds
Imuran 50mg
Allopurinol 100mg
Humira

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Past Meds
Pentasa 3g (Didn't work)
Was on Imuran 150mg
Finally off Pred wooo


DIAGNOSED 27TH FEBRUARY 2013
11-07-2013, 09:59 AM   #2
lost kitten
 
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I was on my way to a bowel resection due to a stricture and severe inflammation that wouldn't settle a few years ago when I started Humira after Remicade didn't work out.
Since then, my annual colonoscopies have been much better- the stricture had healed significantly at the next one after I started on it and I've finally managed to put on some weight for the first time in my life. Still have some patches of severe inflammation and bad days but overall Humira has been the thing that's worked best for me.
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11-10-2013, 11:22 PM   #3
DavidA
 
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When I first started Humira I was steroid dependent and 128lbs (mind you I'm a 6' tall man). I had also just had my colon removed and regardless of that the meds were not controlling the disease. I started Humira and a few years later I weighed 222lbs. (I've lost weight since then but it had nothing to do with Crohn's). I've had no major side effects either. I recently had an MRE and, get this, I have ZERO active disease in my digestive tract.
So it seems to be the drug for me at least. That said, it did take a while to get the dose right. I started with the loading dose then one injection every 2 weeks which wasn't enough so I moved up to once a week and went in to remission for a while and was able to scale back to the 2 week time frame. The injections might feel like napalm going in but it's a small price to pay.
My only suggestion would be to take an antihistamine before the injections to deal with any possible injection site swelling. I use claritin 24 hour because I prefer it to being knocked out by benadryl. Also, leave the pens out for about 15 min. prior to the injection to come up to room temp. and make sure the alcohol on your skin is completely dry before injecting.
Good luck! And feel free to PM me if you want any other advice.
11-10-2013, 11:47 PM   #4
AussieChick
 
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When I first started Humira I was steroid dependent and 128lbs (mind you I'm a 6' tall man). I had also just had my colon removed and regardless of that the meds were not controlling the disease. I started Humira and a few years later I weighed 222lbs. (I've lost weight since then but it had nothing to do with Crohn's). I've had no major side effects either. I recently had an MRE and, get this, I have ZERO active disease in my digestive tract.
So it seems to be the drug for me at least. That said, it did take a while to get the dose right. I started with the loading dose then one injection every 2 weeks which wasn't enough so I moved up to once a week and went in to remission for a while and was able to scale back to the 2 week time frame. The injections might feel like napalm going in but it's a small price to pay.
My only suggestion would be to take an antihistamine before the injections to deal with any possible injection site swelling. I use claritin 24 hour because I prefer it to being knocked out by benadryl. Also, leave the pens out for about 15 min. prior to the injection to come up to room temp. and make sure the alcohol on your skin is completely dry before injecting.
Good luck! And feel free to PM me if you want any other advice.
Thank you so much for the advice
will let you know how i go.
11-11-2013, 04:28 PM   #5
scoutfinch
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I started Humira a year ago and I wish I had started it years earlier. It started working very quickly (within the first week or two) and I felt almost "normal" - i.e. minimal or no pain or nausea - for the first time after years of active disease.

Good luck, if you do decide to try it, I hope it works well for you!
11-11-2013, 04:31 PM   #6
AussieChick
 
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I started Humira a year ago and I wish I had started it years earlier. It started working very quickly (within the first week or two) and I felt almost "normal" - i.e. minimal or no pain or nausea - for the first time after years of active disease.

Good luck, if you do decide to try it, I hope it works well for you!
Thank you I'm so glad it has worked for you.
I start it in a week or 2, just waiting for the script to come through
finger's crossed
11-11-2013, 04:51 PM   #7
scoutfinch
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I'll send out a good thought for you! As with ANY approach to dealing with Crohn's, whether it's medicating, changing your diet, surgery, etc, there is the possibility that it won't work well, but you have to try and press on aggressively until you find something that works for you. A life with very active Crohn's is not a life.
11-11-2013, 05:34 PM   #8
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You're so right Scoutfinch, thank you
11-13-2013, 08:18 AM   #9
M101
 
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Good luck Aussie Chick - I am on my way to starting Humira too. Hope to be up and running within the next week or two.

We can be Humira buddies! PM me if you want to keep in touch on facebook or something

M xx
11-13-2013, 07:39 PM   #10
MichelleE
 
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Question... once starting Humira... is there any chance of remission and being able to stop it, or is it a forever thing????
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Surgery: peri-anal fistualas x 2 2001 and 2005, bowel resection Feb 2014, scar tissue removal 2015
11-13-2013, 07:48 PM   #11
DavidA
 
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Question... once starting Humira... is there any chance of remission and being able to stop it, or is it a forever thing????
Depends. I've become symptomatic after about 4 weeks without it so for me it's a forever thing but I can get by on a fairly low dose. I've experimented before and after a long time in remission I was able to lessen my dose from once every 2 weeks to every 3 weeks and I was fine for a while. When I lengthened it out to 4 weeks I started to get sick again and had to go back to every week and a half for a few months but now I'm back out to 2 weeks again.
11-13-2013, 09:47 PM   #12
AussieChick
 
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Yeah I was actually wondering the same thing about the remission.
I suppose everyone's different. That's what sooooooo hard about this bloody disease, every case is different
11-13-2013, 11:38 PM   #13
DavidA
 
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Yeah I was actually wondering the same thing about the remission.
I suppose everyone's different. That's what sooooooo hard about this bloody disease, every case is different
From your forum signature I see you've only been diagnosed for less than a year and you have never tried a TNF-A inhibitor before. It's easy to find anecdotal evidence of people having issues with certain meds but the reason that this class of drugs is used so often is because it's generally so effective. Since you've never taken a TNF-A inhibitor before the chances of this being effective is pretty good for you. If, on the other hand, you had had past issues with this class of drugs it might be more reasonable to expect problems with this one. But as things stand now you have EVERY reason to be optimistic about your outcome. Just imagine: remission without prednisone!
11-13-2013, 11:47 PM   #14
AussieChick
 
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Just out of curiosity, have you ever tried a TNF-A inhibitor before? I don't see any on your med list.
Nah I haven't.
I was started on Pentasa which did absolutely nothing, then pentasa with imuran for a while, tapered off pred ended up in hospital. Changed specialists they kept me on imuran, but had to lower my dose and add allopurinol because the imuran wasn't breaking down properly. Gave that a go for a while and still nothing, so Humira my next option.
11-13-2013, 11:58 PM   #15
DavidA
 
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Sounds like you're going through the usual throw everything at it and see what sticks treatment plan. I was actually editing my last post when you replied because I noticed your diagnosis date and figured this would be your first foray into TNF-A drugs. I think you have every reason to be optimistic about starting Humira right now.
But why didn't they restart you on Prednisone when you were hospitalized? I take it it worked at least in the short term?
11-14-2013, 01:24 AM   #16
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Hi All,

AussiChick, I hope you do well with your Humira. I was on Pentasa when my blockage came and after my resection my Gastro kept me on Pentasa. The stricturing and inflammation was back in 7 months. New Gastro put me on Humira a year ago and further tests have shown improvements with only a few flare ups.

One bit of advice ...I started noticing some growths on my forehead and scalp. My Gastro advised a full body cancer screening with a good Dermatologist. He removed a few and biopsied them and one was cancerous. It's gone now but I'll go back more often. Humira is a great drug but there can be side effects. Due to my age and a youth spent playing outdoors these growths may not have been caused by Humira but we can't take any chances...

Best wishes,

Alan
11-15-2013, 06:43 AM   #17
MikeinBklyn
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3 years for me. The stricture and perianal fistulas disappeared, (remission). Last colonoscopy said I was clean with no thickening, so no active Crohn's. Yea!!

Good Luck
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11-15-2013, 11:05 AM   #18
jwfoise
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I started Humira a year ago and I wish I had started it years earlier. It started working very quickly (within the first week or two) and I felt almost "normal" - i.e. minimal or no pain or nausea - for the first time after years of active disease.

Good luck, if you do decide to try it, I hope it works well for you!
That's pretty much my wife's story. She was going through a very bad stretch of about a year (she has had Crohn's for decades) and was started on Humira; this was all about a year and a half ago (IIRC). It has been pretty close to a miracle drug.
11-17-2013, 05:45 PM   #19
AussieChick
 
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Thanks everyone for your replies.

Just want to hurry up and start it now, had a rough 2 days even on my pred
11-22-2013, 04:18 PM   #20
lseibert
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AussieChick,
Thanks for your question. My doc has me starting Humira, as soon as my insurance approves it and I wanted to know the same thing you did. Also, thanks to everyone that commented, it really helps to read everyone's story.
Hugs to everyone..
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Crohn's Disease and IBS
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Surgery: Small bowel strictureplasty 02/19/11 and 11/17/11, then a small bowel resection 4/6/12.
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11-22-2013, 06:55 PM   #21
AussieChick
 
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AussieChick,
Thanks for your question. My doc has me starting Humira, as soon as my insurance approves it and I wanted to know the same thing you did. Also, thanks to everyone that commented, it really helps to read everyone's story.
Hugs to everyone..
I had my loading dose on Wednesday 4 pens, didn't even hurt. got my fingers crossed, hope this works. X
11-22-2013, 07:20 PM   #22
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Hi:
I started my humira in May,
11-22-2013, 07:30 PM   #23
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Sorry I shorted my post,I started humira in May, I was also trying my best to stay away from this and remicade, I had my first bowel resection last December, and a colonoscory in april showed crohns was back, I have not had any bad side effects as of yet, seems to be helping, although I have a lot of bile acid D, but that's probably from having my illeocecal valve removed , Dr also just put me on methotrexate (low dose once a week) to keep my system from building up a resistence to the humira, but all blood work is looking good and Humira has a great nursing support system . don't let the disclaimers scare you,Im feeling a lot better about it....Pray often, we have the ultimate healer on our side!
11-22-2013, 09:38 PM   #24
lseibert
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AussieChick....

I'm happy for you that it didn't hurt (I hope mine are that way) and my fingers are crossed for you!!
11-22-2013, 09:54 PM   #25
lseibert
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Night Flight,
Thanks, It's always good to hear it is working for someone!! I'm so happy for you.

I know exactly what you're going through, your story is very close to mine. I had the same surgery in April 2012, but that was after 2 other surgeries to try and fixed my bowel without removing any. My doc wanted me to start Humira sooner, but I have been very stubborn about using it. I tried Remicade before and it didn't work, so is this really better? I hope so...
Thank you for sharing your story.
11-23-2013, 06:38 PM   #26
AussieChick
 
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Iseibert I hope it works for you I have my fingers crossed for you too

Night Flight, I'm glad it's working. I'm just think positive and praying this is the drug that will work for me. I am also on Imuran (Azathioprine) to help with the Humira initially. My doctor doesn't want me to go near methotrexate because eventually I want to be able to have another baby and can't be pregnant on it. But my cousin's husband is on methotrexate and it had been his life saver drug
12-07-2013, 02:50 AM   #27
McStew
 
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Hi AussieChick,
I have been on Humira and Imuran (50 mg per day) for nearly 2 years and am doing beautifully on it. As much as I hate being on such strong medications, I am so thankful to be in remission as long as I have been. I have not had any side effects at all. I wish you the best of luck and hope it is going okay so far!
12-07-2013, 03:40 AM   #28
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I to am on Humira. I saw a program on New Zealand television about colon problems and the two doctors running the show both said to take 500mg of Magnesium per day. So last May I started taking it and have improved until I think that I'm in a state of remission by 98% of normal. I can go for long walks etc without having to find a toilet or even worse. It won't do any harm it works for me.
12-07-2013, 06:13 AM   #29
AussieChick
 
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fantastic to hear McStew. I have my fingers crossed. I just had my second dose the other day. Just a question how long were you on the Humira before you started seeing results?

Boltmannz thanks for the magnesium advise. My mum mentioned that, so I'm definitely going to give it a go.
12-07-2013, 07:55 AM   #30
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I am on Humira and Pentasa. Can anyone say when you stop getting really fatigued after giving yourself a shot? Seems to last a couple of days then starts to subside.
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