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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 :)
 
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.
 
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.
 
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.
:)
 
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!
 
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
 
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.
 
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
 
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.
 
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 :(
 
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!
 
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.
 
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?
 
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
 
3½ 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
 
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.
 
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..:hug:
 
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..:hug:
I had my loading dose on Wednesday :) 4 pens, didn't even hurt. got my fingers crossed, hope this works. X
 
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!
 
Night Flight,
Thanks, It's always good to hear it is working for someone!! I'm so happy for you.:dance:

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.:hang:
 
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 :)
 
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!
 
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.
 
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.
 
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.
 
Hi, my GP & GASTRO are amazed at my progress after taking the magnesium. 500mg capsule daily 1 hour before bed it also gives me a more rested sleep.
 
AussieChick,
I believe it took me less than 4 weeks to start noticing results, it wasn't all at once like it would be for me on steroids, it was a slow (but positive!) progression over the course of those 4 weeks.

LodgeLady,
I've never felt fatigued after I take the shot, as I do my shot right before going to bed - have you tried that? I hope something works for you.

Best of luck to you both. I really hope it works for you - life is so much better in remission! Feel free to ask any more Q's along the way!
 
Yeah that's a great question. I am the same, extremely tired after having my Humira.
Hi AussieChick

I have been on Humira 3 months, while it hasn't helped with my fistulas I still notice I get a little tired for about 4-5 days after my injection. I don't feel as exhausted as I did for the first few injections, so it does get better.

Other side effects I noticed were diarrhea 1-2 post injection, occasionally I feel like I have a bigger appetite - then generally regret eating too much with the diarrhea.

Hope things go well for you :)
 
Hi, I was on humira since early 2009 and I was in remission for 4.5 years having moderate/severe crohns, this length of time in remission was fantastic. I asked my previous idiot of a GI if I could come off humira to see how I got on and he simply said "yeah" no colonoscopy, bloods, nothing. I was ok for 4-5months and then had a flare and I am still dealing with it. Tried polymeric diet to get into remission but no luck so going back on humira and just waiting for the go ahead. It did well for me. Only problem is when I did my dose (every 2 weeks) I'd feel fatigued for 1-2days after so I ensured I did my dose on Friday night and could spend the weekend feeling crap before work on Monday.


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Hi, I was on humira since early 2009 and I was in remission for 4.5 years having moderate/severe crohns, this length of time in remission was fantastic. I asked my previous idiot of a GI if I could come off humira to see how I got on and he simply said "yeah" no colonoscopy, bloods, nothing. I was ok for 4-5months and then had a flare and I am still dealing with it. Tried polymeric diet to get into remission but no luck so going back on humira and just waiting for the go ahead. It did well for me. Only problem is when I did my dose (every 2 weeks) I'd feel fatigued for 1-2days after so I ensured I did my dose on Friday night and could spend the weekend feeling crap before work on Monday.


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Yeah that's what I do give the shot on Friday night. Glad I'm not a party animal ....:)
 
My doc wants me to start after January when I get new insurance. Thanks for the positive comments. I a not really sure I want to start the shots so the stories of good results help.

My doc says I have to have a home care visit to start. Anyone have to do that?
 
My doc wants me to start after January when I get new insurance. Thanks for the positive comments. I a not really sure I want to start the shots so the stories of good results help.

My doc says I have to have a home care visit to start. Anyone have to do that?
I went into my hospital and the IBD nurse helped me for my initial shots. The pens are really easy, hurt a little, but it's quick :)
Since been on the humira i no longer have diarrhoea and my blood work is coming back really good. I have been in hospital twice, but due to a partial blockage. This is however from all the damage done in the last year because none of the other medications were working, so there is a lot of scar tissue there atm. However I am not in a flare, no inflammation, nothing and this is the first time :) So humira for me has already started working. I now just have to wait for my MRI scan results to see how much damage is there.

Good luck with yours, I hope it works for you too :)
 
Keep us updated Pam! I had my loading doses yesterday! Feel like shit today, but hopeful.
My tissues/muscles feel sore in odd places if tht makes sense.
I'm just resting and drinking fluids and hoping this works! Thanks
For encouraging a positive thread the things I have read scare the life out of me!
 
I started Humira about 8 months ago after getting an anal fistula. Although the fistula is still there Humira has made a huge difference in my symptoms overall. I have the best BM's now! My main concern was getting sick all the time and honestly everyone I work with catches colds way more than me still. I eat healthy and wash my hand, that seems to keep the bugs away. So, overall Humira has been great for me!


HD
 
Keep us updated Pam! I had my loading doses yesterday! Feel like shit today, but hopeful.
My tissues/muscles feel sore in odd places if tht makes sense.
I'm just resting and drinking fluids and hoping this works! Thanks
For encouraging a positive thread the things I have read scare the life out of me!
I was the same. Was reading way too much negative things about Humira which was terrifying!!
Good Luck with the Humira :) Hope it works for you
 
Hey guys,
Just wanted to give you an update. So I have been on Humira for 6 weeks now and I can honestly say I am feeling great. I have been in hospital twice however with partial obstructions, but with my last MRI its just inflammation and no scar tissue and I am already noticing a HUGE difference. I have been pred dependent the whole time, but I have been off it now for a few weeks. The day of and after I give myself a shot I am pretty tired all day, but it passes by the second day. Also I am still extremely tired by the afternoon and sometime need a nap, hopefully this improves. I also notice 3-4 days before my shot is due my symptoms start to show, my knees are aching horribly, a little diarrhoea starts etc. But as soon as I have my shot, I'm all good again, except for the fatigue. To me that really shows me the Humira is definitely doing something, because without it, I would be pretty 'shit' house :)

I hope everyone is doing well
X
 
That's awesome news AussieChick!! Humira was a total lifesaver for me since I started treatment a year ago. The fatigue was the only downside but hey it's the best I've felt in 5 years so hell I'll take it!!

Please keep updating your progress and I hope your positive results continue!
 
I just sent all of my information in to the Doc to starting getting certified for Humira.

I was in remission for over 10 years and had a bad flare up start around Thanksgiving. I am now on 60 of prednisone a day but it feels so much better.
 
Just had my Humira ambassador come out. She was really nice :) she came right here to the house. I got a cool calendar and symptom log. I took my 2nd 2 injections on New Years Day. I've had a slight headache, some aches, and become really exhausted but it's dying down today. I had a normal bm today and my chest pains have been so much less! So far Humira has been life changing for me. :) I really hope this continues. And now I only have to take 1 injection every 2 weeks. Happy Humira girl here and FYI I am the most paranoid about medicine and anxious person you can imagine. So this was a giant leap and very challenging for me. I literally imagine having a stroke or anaphalactic reaction.
 
AussieChick - very happy that you're doing better! Coming off pred can be terrible, but you seem to be faring OK. I hope your health continues to improve and that you get back to "normal" soon!

Ckoenig - that's awesome that it's working so quickly. Your concerns about medication are warranted, and yes, it's a risk to go on a biologic, but (as you've seen) sometimes risks can have worthwhile rewards. Hope you continue to get better!
 
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